#1263 DKA In Our Town Part 2
Brianna continues discussing the challenges of managing her son's type 1 diabetes post-DKA and the support systems involved.
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Scott Benner 0:00
Hello friends and welcome to episode 1263 of the Juicebox Podcast
Welcome back, this is part two of a two part episode if you haven't listened to 1262 Do not start listening to this one because it's not going to make any sense. This is part two, Episode 1262 is part one, this is Episode 1263, part two of DKA in our town, nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. Tickets for the 2025 Juice cruise are limited. I'm not just saying that they actually are limited. We have a certain window to sell them in. And then that's it juicebox podcast.com Scroll down to the juice cruise banner, click on it. Find a cabin that works for you and register right now. You are absolutely limited by time on this one. I'm so sorry to say that it sounds pushy, but it's the absolute truth juice cruise 2025 I hope to see you there, we're gonna get a tan talk about diabetes and meet a ton of great people who are living with diabetes. It's kind of going to be like floating diabetes camp. But you won't have to sleep in a log cabin, you'll get a tan. And it's not just for adults or kids. It's for everybody.
This episode of The Juicebox Podcast is sponsored by the Omni pod five, learn more and get started today at Omni pod.com/juice box. Check it out. today's podcast is sponsored by us med us med.com/juice box you can get your diabetes supplies from the same place that we do and I'm talking about Dexcom li Bray Omni pod tandem and so much more. Us med.com/juice box or call 888-721-1514 This show is sponsored today by the glucagon that my daughter carries G voc hypo Penn, find out more at G voc glucagon.com. Forward slash juicebox.
Brianna 2:17
So anyway, so the next day, it's five o'clock in the morning, this is the 31st at this point, we noticed that his right leg was swollen. And you know, we told the nurses were like, hey, his leg looks bigger. Also, we were really concerned because his face was swollen, you could see the tip of his nose was like shiny. And his eyelids were so swollen that he could barely open his eyes. And like the fat, like is on the top of his feet were swollen. So it was just like his entire body. And so he told the nurses and you know, it's five o'clock in the morning, and they come in, they end up calling the IV team and, and they're looking at it and you know, they thought like the IV could be infiltrated like we need, you know, this one's blown. Like we need to get potentially something else in him. While they're looking at it. The IV team, like one of the girls was like, you know, you need to call the doctor. And so he goes out calls the doctor comes back in on his little, you know, phone, he's like on the phone with the doctor at that point. And she's like, You better tell him to hurry up and get here. And so like, we're like what, you know, like, again, like we have no idea what's happening. So, doctor comes in, he looks at it. He's like, yeah, definitely needs, you know, new IV. You know, at that point, though, this is only like a day after he is resolved from DKA. And, you know, he really doesn't have a lot of sights left that they can even really try. So they took him back to that little procedure room to try to get another IV. He's in there for a while again, and they ended up getting one in his foot. He mentioned that they were going to try to like the only ones left tours were his scalp. But they're like, We don't like to do that. So they finally got one in his foot. And then we're like, Okay, well why is this leg swollen? Why is it two times the size of his other leg? So at that point, in addition to like they were still doing, I guess like, you know, blood sugar checks really frequently labs really frequently they had been doing neurologic, like hourly exams, like we were sleeping. I mean, that was non existent for most of the time that we were in the hospital, like 45 minutes here and there. Now they were checking like his leg circumference, like every time like every couple hours to see if it was going down. And you know, like another like 12 hours went by and it wasn't going down. And like I was like, Do you think that he needs an ultrasound? They had told us in the beginning that they wanted to get that line out of his leg as soon as possible because there was a high risk for a blood clot. You know, I just wasn't comfortable with it. And again, parental instinct kicks in where it's like okay, first of all, we almost got sent home like what, what is the harm at this point to expose him to on ultrasound like that's like, no big deal. Like, just to rule it out, put my mind at ease. So they did an ultrasound. At that point, I rob actually went home to go get his clothes. And he also went home to grab COVID tests because at that point, my throat was really raw, and the air was really dry there. And I was thinking like, Okay, this is probably because it's super dry. But like, in the back of my mind, I'm like, what if I'm getting sick? Like, you know, we were in hospitals, we were in the doctor's office, like, what if I was exposed, things like that. So I'm here by myself, they do his ultrasound, Rob gets back. And probably like an hour after his ultrasound was done, they came in and they're like, he has a blood clot. And he's like, Jesus
Scott Benner 5:46
Christ. Are you serious? Oh, my God. Kids, okay, now, right?
Brianna 5:53
He is,
Scott Benner 5:54
Okay, keep going. I needed that. I just make sure. She's like,
Brianna 5:58
it's just like, you know, like, when you feel like things can't get worse. But then they do. And then they do again. So you know, that happens. And we're like, oh, great, like, now what? And they're like, Well, we're gonna need to start them on blood centers right away. So they got the orders and for that, so he was on Lovenox, then in the hospital injections twice a day there. I think they actually had one going through his IV at first before he was disconnected from the IV. Anyway, so Rob gets back with those with all of our stuff and the COVID tests and whatnot. And, you know, by that point, it was like hours later, after I start started feeling like that wrongness in my throat. And I started to feel like a little congested, and I'm like, great. So anyway, I ended up going the bathroom. Like, I'm just going to do this COVID test. It was positive.
Scott Benner 6:44
Yeah, of course it was. I don't see how I'm waiting for a building to fall on you or something. So like the positive COVID test. You don't even have the there was the hospital held up while you were there? Did you have to brandish a weapon to defend it or anything like that? Like how close the Die Hard did this get? Exactly? Jesus? Faster? Can you tell me what part of the country you live in without telling me exactly where you live?
Brianna 7:08
I can tell you the state. That's fine. Good. We live in Pennsylvania, the western part? central central. Oh, yeah.
Scott Benner 7:17
My son went to college there. I know what you're saying. Don't worry.
Brianna 7:20
You know, so at that point, then I had to tell the nurse like, you know, because they're in and out constantly. And actually, you know, they were being very lax. Like they were all masked and like, visitors were supposed to be masked too. But like, we were there for so long at that point, like, it was like, a couple of days, like they were really lacs about us with masks. And so like Rob Kai, and I obviously weren't masked, and, you know, I had to tell the nurse like, Hey, I just took a COVID test, and it's positive. And so then it went from, you know, I put on a mask, obviously, for, you know, out of hers, at that point to continue to expose other people. But they ended up moving us to the what's it called the negative pressure rooms, okay. They had like, one of those. And so they moved us into there. And then from that point forward, they were in PPE for the rest of the time. And they had to change it every time they came into our room, and somebody was in our room, like, every 20 minutes. So I can't imagine how much waste it like pains me
Scott Benner 8:20
counting, counting and counting. I'm counting constantly saying
Brianna 8:24
insane. I mean, because we were there for 11 days. And it was like on the third day that we were diagnosed with COVID. So anyway, so I was positive. At that point. Rob was feeling fine. They had tested chi, he was negative. And then that night into the next day, chi spiked a fever overnight, and he tested positive for COVID. That Well, yeah,
Scott Benner 8:41
I mean, I think we were all waiting for that. But yeah, how many decades will take you to pay the hospital bill?
Brianna 8:49
I would love to know, like what, you know, the actual total is I haven't gone back and looked at that. I don't really want to know, but
Scott Benner 8:55
your insurance is handling it, though. Yeah, I'm
Brianna 8:59
very fortunate for that. You know, then they were like, Okay, well, he obviously has diabetes, you know, he's high risk. He has COVID. Now, they were like, he's a candidate, they ended up looking into it. He's a candidate for remdesivir. And, you know, like, there's like, a lot of talk about, like, what's a good treatment is, you know, what not like over, you know, the time that COVID started. And so it's like, you're really hesitant to like, give something to your baby. That's, I mean, he's only nine months old. And, you know, it's not really like that known, but we just trusted them. And obviously, we were like, if we don't, and he gets even sicker. And we didn't you know, give him treatment. He's
Scott Benner 9:35
in no situation to like fight a virus off during all this probably. Yeah,
Brianna 9:39
like he just recovered from DKA like, he's so weak. You know, he had lost weight from even just the like, when he first got in the hospital. He already had like, last week. You know, that was just like a really trying time. He lost his voice. He was coughing. Thankfully, like it never went to his lungs. That was obviously like the greatest fear you know, tempered Your checks like so we had like all of these checks. And so really there was somebody in there like every 2030 minutes. So anyway, and at one point like his, his temperature actually went like the other way. And they're like, like hypothermia. And like they come in and they have these clothes like these random clothes and like they're bundling them up in like this random, like, I don't know if they had like a donation, like they took in donations of clothing. And he's like, in this like, little like baseball, like it was like a baseball, like sleeper. And then they, they put them in that and then they like, put them in this little sweatshirt. Like they had them all bundled up. It was just crazy. And then the next day, Rob ended up starting to feel bad. So, you know, here we are, like, we're feeling awful. They're like trying and you know, like, at that point, like most people would be starting to get like diabetes education, and like nutritionists and things like that. But we were like, literally like on like death's doorstep like we got COVID Really bad. Yeah. Like every single symptom that you could possibly have. Oh,
Scott Benner 11:02
the two of you were oh my god, we did you. Did you prove yourself? Briana, if you make poop in your pants, there was no.
Brianna 11:08
Thankfully that thankfully. did not happen.
Scott Benner 11:11
I imagine you've just been like, Yeah, sure. Why not?
Brianna 11:15
I mean, things couldn't get any worse at that point where you you were
Scott Benner 11:18
living in this in this room in this pressure room, right? Oh,
Brianna 11:21
yeah. Yeah, we couldn't leave at that point. So at first, like we could least go out and like, you know, alternate like going to like the little cafe area or, you know, Rob would go and grab us like breakfast or coffee or whatever. And then we were like completely in isolation. Like they had to get us things if we needed it. And it was like they
Scott Benner 11:37
bring you cots. How big was the room? I'm sorry. I have a lot of questions. How big was the room?
Brianna 11:41
It was actually a really big room. Okay, but Rob Chi
Scott Benner 11:45
in this in this room? This? What do they call them again? Pressure? What do they call, like negative negative pressure rooms? Right. So yeah, that means when they open the door, like airborne stuff, can't break the door, seal it just right. So they're basically this is a zombie movie. Now. They're like, we'll just keep the three of them in there until they die. And then the scrape will mount back. Yeah, okay. Yeah, no one looked like they were gonna shoot you. Right? They weren't like, well put them down. Nothing like that. Okay, good. Good. Good.
Brianna 12:10
Unfortunately, unfortunately, not. Fortunately.
Scott Benner 12:15
And you got really, so you had the sweats. And good. Tell me about your COVID for a second. Long
Brianna 12:22
story short, I was the same thing. Like what you just said, like I was sweating, but then I get really cold. So this is like something that stands out in my mind, I kept turning up the thermostat in the room whenever I would get cold. And then it would be like 1000 degrees in there. And like, you know, the staff would be coming in and out and like, I will never get the one of the endocrinologist like in the room trying to talk to us about you know, they were trying to get like, they were trying to get him Dexcom right away. So you know, like talking to us about that. And like she was like sweating, like he's in her PPE and like you could like see, like beads. Oh
Scott Benner 12:57
my god, the first time I had COVID It was like the sweats were crazy. And then exhaustion, and like middle the day that I was kind of okay, and then I got freezing cold and then that went back and forth all day and then I couldn't sleep at night I'd sit up sweating from like 9pm till 6am Then I would sleep from like 6am to like 9am And then I'd get up and make the podcast and then I would do it all over again. It went on for like a week and a half there are episodes of the podcast where I I recorded them sitting here wrapped in blankets or sitting here in a T shirt dripping like I was coming off a meth like like there's like like and I'm just like you'll never know when you listen to them but I'm very proud of myself because I was like, That's right. Yeah, but so you went through that stuck in that room was there arguing Erie too sick to argue. If you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most. Be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily G vo Capo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you store G vo Capo pen and how to use it. They need to know how to use G vo Capo pen before an emergency situation happens. Learn more about why G voc hypo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma. Visit G voc glucagon.com/risk For safety information
Brianna 15:00
Oh, no, no, we were we definitely like we were just so like, are sad were like worried we're feeling awful. Like we're just trying to feel better. And like, you know, we weren't sleeping and you know, you're sick you need to sleep to get better. And like we couldn't really sleep. There were a couple of times that like we literally just like, shut off. Like I remember one time I was just like, I literally cannot stay awake anymore, even though I wanted to. Like I had that feeling that I didn't want to sleep because I didn't want to miss anything I didn't sure like the doctors coming in the checks, like what was this result? You know, but one time I just had to shut off and I went to sleep. And we were talking about that the other day actually, Rob told me that there was like a time that they had to come in and get get a blood draw. And he was just like, Absolutely, like hysterical chi was. And, you know, he said like how he felt so alone in that moment, because I was actually I was in the same room. I was sleeping on the couch. But I was like literally passed out. You know, it was just like a really like, low moment for him. I guess like, you know, you're in this realization, you're feeling awful. You're babies, you know, you just feel helpless. So it was just like a lot of that, and just trying to feel better, so that you could take in the information that they're trying to tell you. So another moment that stands out to me is, you know, I was so sleep deprived. And I remember I was sitting in a recliner, holding chi and our endocrinologist, someone was talking to us and trying to explain something about diabetes and insulin regimen and things like that. And what they were going to try to do. And I was just like nodding off. Like I was literally like head going down, falling asleep. And she's like saying to rob, like, is she okay? And he's like, Oh, yeah.
Scott Benner 16:40
No, everything's fine. We're all fine. Nothing to worry about here.
Brianna 16:44
I mean, so anyway, so Okay, time goes on. And obviously, we're starting where we had to have a video visit with hematologist from the main hospital that our hospital system is part of, they didn't have a pediatric hematologist, you know, on site. So they came out, like once a month, to our endocrinology office, it's like a multi specialty group for pediatrics. And they, we were going to end up meeting with them after the hospital, but we had a video consult with them, so that they could explain to us like after Kai gets out of the hospital, like he has his blood clot. And like, we need to talk to you about like, what's going to happen, like he, first of all, he's going to need to be on blood thinners twice a day for three months, probably. And also, he's going to have to have ultrasounds again to check like every six weeks to see if the blood clot is going away. And they explained it like, you know, the Lovenox the blood center is not to dissolve the blood clot. Like that's not what it's for, it's to make it less sticky. So blood stops attaching to it. And like making it larger, which obviously isn't like higher risk, you know, as the blood clot gets larger, and things like that. And, you know, so we're like, what happens if the blood clot does dislodge and go somewhere else? Like, you know, so now we have to be scared of that, like, is his blood clot going to cause a stroke? You know, is it going to go to his heart, you know, things like that. So like, not only do we have now a newly diagnosed type one diabetic, we have COVID this blood clot issue, like, you know, that he got from the IV that obviously was needed to save his life, but now also is threatening his life. And now we're going to have to give him injections of you know, blood centers. They did also explain that the like, if the blood clot sticks around, and if it gets larger because of where it was and how it was blocking, like there was a potential like it could be there forever. And then it could potentially like cause problems like,
Scott Benner 18:44
are you oh my gosh, like it could cause like
Brianna 18:47
discoloration of his leg. It could cause like cramps in his leg. Like if he played sports in the future. Like it could cause issues with that. He might need like stockings forever depression.
Scott Benner 18:57
Yeah,
Brianna 18:58
yeah. Yeah, like so like, again, we're like reeling like how can this literally get any worse? Right?
Scott Benner 19:04
Did you find out did it get worse?
Brianna 19:06
We started to get better. He got his Dexcom on they came in trained us on that. And I was super thankful that like that was like a, you know, like some kids and I'm so blown away by this are sent away like, especially like really little without a CGM. And I just, I find that really wrong. Because like, it's I feel like in this day and age, it's like, unnecessary and archaic. Yeah, for sure. To do that. It's just Yeah. Anyway, so our hospital was like amazing with that our doctors were amazing. Like getting him technology right away, you know, especially given his age. And like they just didn't really know like they ended up giving him so they started him on Lantus and homologue. And they gave him his like, first doses, subcutaneous, like after he was off of the IV and like the drip and everything. They gave him his Lantis and his human log at the same time, and they ended up like just tanking him completely. Like, there was nurses in there, and we're like, piping glucose gel in his mouth, like, you know, and that's kind of like our first experiences with Lowe's then, you know, like, they're freaking out, like, oh, we gotta get, you know, it's just was like really scary. And they're freaking out,
Scott Benner 20:17
isn't it? You're like, well, I don't know what I'm talking about. But they Oh, God, they don't know either. Yeah,
Brianna 20:23
yeah, exactly. And so, you know, then of course, he's like backup the three 400 After the glucose gel and things like that. So this kind of like went on. And then they realized that they could not even use like the human dog Junior pen, like the half unit pen and keep him stable. Like, even like if he was 400 that it was too much. So at that point, they realized that they needed to get him on a pod, on Omni pod so that they could do smaller amounts. And they were amazing at getting that prior all sent through, like, super super quick because I think they basically told the insurance like this kid, either gonna stay in the hospital on like a drip, because we can't even control it with a pen, or, you know, injections or you're gonna give them an omni pod. And we actually ended up I think, so we had Dexcom on like, day three, and then Omni pod trainer came in on, it was just the doctor, we had the Dexcom trainer, their Omni pod on day five. So the doctor came in and put the first one on and you know, explained about the PDM and things like that, you know, they were able to do as basil, which is Basil was point o five, of course per hour, he was only 16 pounds. When we were in the hospital, he dropped down to like 15. So he was like super, super insulin sensitive.
Scott Benner 21:44
My daughter is 20 years old, I can't even believe it. She was diagnosed with type one diabetes when she was two. And she put her first insulin pump on when she was four. That insulin pump was an omni pod. And it's been an omni pod every day since then. That's 16 straight years of wearing Omni pod, it's been a friend to us. And I believe it could be a friend to you, Omni pod.com/juicebox. Whether you get the Omni pod dash, or the automation that's available with the Omni pod five, you are going to enjoy tubeless insulin pumping, you're going to be able to jump into a shower, or a pool or a bathtub without taking off your pump. That's right, you will not have to disconnect to bathe with an omni pod. You also won't have to disconnect to play a sport, or to do anything where a regular two pump has to come off. Arden has been wearing an omni pod for 16 years. She knows other people that wear different pumps. And she has never once asked the question, should I be trying a different pump? Never once Omni pod.com/juice box, get a pump that you'll be happy with forever. You've probably heard me talk about us Med and how simple it is to reorder with us med using their email system. But did you know that if you don't see the email and you're set up for this, you have to set it up. They don't just randomly call you but I'm set up to be called if I don't respond to the email because I don't trust myself. 100% So one time I didn't respond to the email and the phone rings the house is like ring. You know how it works. And I picked it up I was like Hello. And it was just the recording was like us med doesn't actually sound like that. But you know what I'm saying? It said hey, you're I don't remember exactly what it says. But it's basically like hey, your orders ready you want us to send it push this button if you want us to send it or if you'd like to wait I think it lets you put it off like a couple of weeks or push this button for that. That's pretty much it. I push the button to send it and a few days later box right at my door. That's it us med.com/juice box or call 888-721-1514 Get your free benefits check now and get started with us med Dex comm Omni pod tandem freestyle, they've got all your favorites, even that new eyelet pump, check them out now at us med.com/juice box or by calling 888-721-1514 There are links in the show notes of your podcast player and links at juicebox podcast.com to us Med and to all the sponsors. So
Brianna 24:15
after the first pod change, he ended up having like a a low and like we're sitting there and you know, he he was dropping on Dexcom and his head like he was sitting in my lap and his head just kind of like started like bobbing a little bit. And he got like super sleepy and like we're trying to like rouse him and, you know, obviously he was feeling low, especially after being you know, 500 blood sugar for so long. And so we're like, okay, you know, they treated him whatever. And then we ended up having a pod failure in the middle of the night. I think that next night, and the doctor had to come in at like four or five o'clock in the morning because they were giving him boluses and nothing was happening and she was changing it out and and probably like an hour or two hours after that, he ended up having another low. And she actually was in there. And you could see the fear in her face. This is the endocrinologist. And she was actually piping peaches, like through a syringe, like baby food, peaches into his mouth. And then she's like, you know, get glucose gel and you know, like, give him more give him more like, okay, it's fine. Give him more. You could just tell she was like, really? Kind of like what's going on? Yeah. So like that happened. And then like, Rob, and I started talking about it and are like, okay, so this is like, weird. Like, he got this pot on. He's had now two pods on and why is he having like these seeming like low blood sugars after he gets these pods on, like, you know, he's on such little amounts. And, you know, things like that. So there was another intensive issue was like, really awesome. We actually had issues with chi feeding while we were there. So I was sick with COVID. And actually, my breast milk supply tanked completely. Like I was not producing, like barely anything, probably very hydrated to Oh, yeah. And super stressed, and which is a huge part of it. And, you know, COVID actually is known to tank supplies. And he was like, refusing to eat, they actually have this picture of all of the different formulas, they had all these formulas line that they brought in, he would not take a single formula because he was never formula fed. And you know, he just didn't want it and they had apple juice, like a toddler like Apple and carry pouch, we ended up ultimately, like, trying to give him cow's milk, which you're not supposed to do until after one. And that was literally the only thing that he would like, maybe take like a little bit of it. Okay. And so that's how we kind of got by but like, at one point, the doctors like, we have to get him to eat something because she couldn't do some insulin, and like figure out what his ratios and things like that were because he wouldn't eat. I mean, how much is the way at that point? 15 pounds. Yeah,
Scott Benner 26:58
I listen Arden weight 19 pounds, and I couldn't do it. And she was eating, you know, after she got the hospital's freaking impossible, almost, you would have taken food away from or I don't know what I would have been able to do. Yeah, yeah,
Brianna 27:09
it was just crazy. And we're just like, well, I'm like, I don't know what to do. So like, they were trying to, like, they had like a lactation consultant and like, trying to, like, be able to like up my supply. So like, he could, you know, hopefully eat something. So it was like, very, like small amounts of ounces. Like, you know, we were trying to like then, you know, bottle feed him. And he would take obviously, and then he was taking a little bit of the cow's milk so it was like after a couple of days, but this one awesome, awesome intensive is she was so sweet. She actually went to like Trader Joe's. And she like we had told her we actually were doing baby led weaning, have you ever heard or? Yeah,
Scott Benner 27:43
baby led weaning? Like, Lea. I don't know, baby LED. I gotta find out. I got Google.
Brianna 27:52
Yeah, that's what it's called. I'm like thinking of like, just, like weird when you say it fast. That's yeah. Yeah. So it's like, instead of like doing purees, and things like you pretty much just go into like finger foods. And so we were in the process of, we were trying to do 100 Different foods by age one. And we were up to 40 foods like right before he was diagnosed. And you know, so it was really fun. We were actually like, recording every single new food that he ate. Like his reaction to everything. So it was like a fun experience. And like, just like that, trying to hit that goal of 100 foods. So anyway, we told her like, you know, at home he really liked like berries, you know, things like that. And so she actually went out to Trader Joe's and got him like fresh blueberries, strawberries. She got him like fishy crackers and things you knew he would eat? Yeah, like that. He would potentially like try so and she brought back like stuff for us. Like the one day she's like, you know, I know you guys are like stuck in here. She's like, I'm going for coffee. Would you like anything like it was just like really comforting. You know, like, you don't really get that a lot with like a health care provider that she's going to go out and get your kid food and you know, bring you coffee.
Scott Benner 28:55
At some point. They were probably like these poor people like and you'd been there for 1011 days they probably felt like they knew at that point, you know? Yeah,
Brianna 29:05
like and we did express like to her to like at that point. So she was the one who really listened to us when we told her told her about the pods were like look something is happening something is not right here. Like when he gets these pods on it seems like he his blood sugar's dropping. And you know, she's like I get it like you know, like she knew she had heard around I'm sure because like there were nurses involved the doctors involved with these like times that they're like, you know, piping glucose gel and peaches and things in his mouth. So she listened and I was like at that point like frantically like searching the internet for information about Omni pod and I think at that point I had already found I think I found juice box while I was still in the hospital. Because I was already like a group person. Prior to all of this, like I have a group for everything like everything. Craft thing vacations, you name it, I have a group for it. And I was just like searching like it is Has anybody had this reaction to the pods. And I did end up coming across something on the Omni pod, their manual. And it talked about a priming dose. So when the pod is placed, and you pinch the skin up, and that cannula inserts, that insulin that goes into the tube, like obviously is touching the infusion site, what, like he was so insulin sensitive, that, you know, we then had the thought that that priming Bolus was then causing him to tank.
Scott Benner 30:44
Okay. Even at that little bit, geez. Yeah. So,
Brianna 30:49
you know, like, we couldn't prove it, obviously. And so then our doctor, like reached out to the insolate rep. And was like, hey, like, we have this baby, we're having this issue, whenever we put the pods on, and, you know, at first, like, they didn't really like kind of like, believe it, I guess you would say. And then like, after, like, I think he got three pods total in the hospital. And we ended up because of like, who was on call, we had all three, endocrinologist, the first one, the gentleman, he was only like day one. And then the other two female endocrinologist, they had us pretty much for like the rest of the days that we were there. And so they got to witness a lot, obviously. And like, the third time it happened, like, the endocrinologist who he ultimately ended up with, you know, she got to experience it too, because she also had an event where she was, you know, piping glucose gel into his mouth with a syringe. And you could just again, see the fear. And these doctors eyes, like what's going on? And so, you know, they ended up talking to their colleagues back at like, the main hospital, because when they had backing up, when they when she reached out to insulin, they're like, no, like, the rep was like, no, like, I don't think there's anything like that, that, you know, like, there's no prime Bolus, but like on the actual manual, it does say that. So walk me through.
Scott Benner 32:06
So you're because you prime an omni pod before you put it on? Right? Okay. And then you put it on, and it inserts and then what happens? So
Brianna 32:16
like that insulin that's in that tube, like obviously, then you know, connects?
Scott Benner 32:22
And then yeah, and that for somebody, your son sighs and in situation and not eating is a lot of insulin. Yeah, I got right.
Brianna 32:29
Yeah. And so they actually then talk to their colleagues. So the doctors like reach out to their colleagues at the main hospital. And they ended up coming up with a protocol for pump changes for chi, and like, I cringe at it now. Because they actually like wanted his blood sugar, like over 400 to put up to put a pot on him. And
Scott Benner 32:54
this is just really the amount of insulin that's in the cannula, which is very short to begin with. And then once it's an inserted, it's not like it was pushing more it was just kind of whatever was touching, keeping, I guess, is the word I'm looking for. Right? Which is probably just an it's probably just a couple of drops of insulin. I'm trying to think about it probably only a few drops. And
Brianna 33:19
when you think of like a drop of insulin like especially when he's on a basil of point oh five. And at that point, his Bolus is like point oh, four. Yeah.
Scott Benner 33:25
Oh, no, listen, when Arden was two years old, even I had to teach myself, I don't know how many people listen how far back I heard, yeah, like you had to, I used to take insulin, put it in a dish, color it with food coloring. And then and then I would draw it into the syringe. And then I would practice pushing on the plunger to get one drop to come out. So I put the food coloring in. So I could practice by the way not to inject it. And so what I would do is I would practice over and over again, visually, this is how much pressure let's add a drop of insulin from the syringe. And then I'd start doing it with my eyes closed, because you can't see the end of the syringe when it's inserted. Right, when I could do it with my eyes closed, then I would sometimes inject Arden with a drop of insulin, because that was enough and anymore was too much.
Brianna 34:10
Right? Exactly. So it's like nearly impossible without a pump. You know, for a child that small. Like you're really stressing yourself out. And I mean, like look at all the work you had to do to go through just like hopefully getting the right that's all
Scott Benner 34:24
I was shooting for. I was like well, and like literally I can feel myself now with my thumb like it's a little bit of pressure like That's enough pull it out. And that was you can only put like, I would only put like a half a unit in there just so I could get enough pressure to get a drop out. And that went on for a while, by the way because she's probably honeymooning to at some point and to be perfectly honest with you. I didn't even know what a honeymoon was back then. So I'm that guy in that story is not the guy you're talking to right now. Like he was in full on panic. So Right,
Brianna 34:56
exactly. Yeah. And yeah, and I mean, especially to win You're dealing with a child that's small, and like, you know, like I was a new mom, still, I was like, not even, like, I didn't even feel like myself again yet. Like, I felt like I wasn't even like, you know, really like, into motherhood, like when all of this happens
Scott Benner 35:15
like COVID. And you know, the experience of being in that room for that long, that's kind of be overwhelming, you
Brianna 35:22
know, this thing happening that they like, literally didn't even know what was happening. So the plan that they set up, then, when they sent us away from the hospital, was to take the stop the basil, take the old pump site off an hour before the site change, so obviously, that he's not getting any basil. So make sure that he's more than 300 by fingerstick. Before that, after the site change, feed him again, and keep the basil discontinued for an hour. If after an hour, his blood sugar was more than 350, we would turn the basil on but only for five minutes and turn it back off.
Scott Benner 35:58
Was this an overcorrection? Or does this actually what was necessary? Sounds like an overcorrection. To me, that's what I'm wondering. Well,
Brianna 36:05
yeah, well, so I, we started documenting them because like, eventually, like, I would love to, you know, potentially, like speak to somebody on the pod, or insolate. Just so you know, like, if this happens, like, I'm fine with it, like, I just don't want something to happen to another small child, like it happened to us. And that uncertainty and the fear, like, I am 100% Omnipod, I absolutely love it, our life would not be the same without it. Huge advocate. But in the same token, like if he would have been in range, and us not do what we do now, like so for instance, like there was a time where we did a pod change. And he was, I hate to say this 454 We were newly out of the hospital. And breast milk sent him to the moon. And so like at 830, he was 454. And by 1045, you know, so two hours later, he was already 226. In that time, he had more milk. So he had like fed again, he had dropped like 200 points. And then there was another couple of times that we had documented that it was like the same like he's dropping like 250 points, there was one he dropped over 200 points in one hour, a pod
Scott Benner 37:19
chain from a pot from putting a new pod on. Yes, with the basil off,
Brianna 37:23
right. No insulin on and he would have been in range, like at 100. You know, 150 when that happens, you know, like, obviously, we'd be dealing with like feeding a low that we had no idea where it ended. You know, so it was like really scary. And, you know, it took us a really long time to kind of like figured out a regimen for that. So she was thinking like by turning the basil back on for five minutes that like any insulin that might have been in the cannula would be delivered, like any extra, and then like turn it off again, because like he would have gotten that insulin that they thought could be in there. So basically just like observe for the next hour, like if his blood sugar was like study then turn the basil back on. If he was like below 300 Keep the basil off until he was like, leveled out. Yeah, has
Scott Benner 38:07
this experience made you better diabetes?
Brianna 38:10
Like in hindsight? Yeah, I would say
Scott Benner 38:14
because, first of all, let me say this on the pod is not FDA approved for people under two. So you guys were using it off label, which is fine. But I'm going to assume that what they would say is Well, yeah, that's an amount of insulin that I mean, it's it's just how the pot works. And for larger people, it's it's an nominal amount. That doesn't mean anything. But but my my, my bigger question is because it feels like you were like, a lot of trial by fire and a lot of getting to see how insulin works. And I'm wondering now, it's a year and a half later, right? Right. Like what's cause a one see right now,
Brianna 38:50
last time it was 7.1, down from 11. At diagnosis.
Scott Benner 38:53
Nice. And that and he's still little, he's, yeah,
Brianna 38:57
he's 26 pounds. And he's a little over two. He's still a little he's like really low percentiles still.
Scott Benner 39:03
Do you feel like do you feel confident about using insulin? Do you get what you expect? I guess is my question.
Brianna 39:09
Yeah. And I remember feeling like so like, I was like, on top of the world, the one time where we did a pod change for like, the first time when he was like, in range, and like, we knew the drop was coming. And we just like, fed it. You know, we're like, as soon as he started dropping, it's like, okay, give him some carbs weight, started dropping again, give him some carbs. Wait until we like leveled out and I like, felt like amazing, like that time that we like, did a pod chain, I
Scott Benner 39:35
did this thing. And I knew what was gonna happen. And then I made a change and it went the way I expected it to. It's such a good feeling. Yeah,
Brianna 39:42
so it really like affected a lot of stuff though. So like, you know, so when so when we went back, like three days later after we got discharged from the hospital, that was when our next pod change was and they wanted us to do it in the hospital and in the doctor's office. So outpatient, and it happened again, of course, like while we were there And so at that point they knew like 100%. Like, even though it's like, okay, no, this wasn't happening. They actually were like, okay, yeah, this is happening, like, we've now seen it like four times, and what the diabetes educator was actually the one who recommended tapping the pods out. And so what we do is when you take off the blue plastic piece, oh, by the way, you do. Yeah,
Scott Benner 40:24
I've done it for years. You I pinch the back of the pod. And then I slap the middle of it onto my finger. Yeah, yeah. Then the quick stop knocks out like, I do it for condensation real reasons under the window, because you knock out that kind of you knock out that extra in the window from the priming, and that you don't get the condensation buildup,
Brianna 40:44
right. So and I'm sure you've noticed, like you see insulin on your hands, like there's, and sometimes it's a really like, good bit. And so for him, like, we've actually like kind of reverse engineered the amount of like, with the amount of carbs we had to give him. And like, I think that it's probably up to like a point five, like a half unit, sometimes with how much we've had to feed him like after the drop happens. So now what we do is like, We actually just had a pot change last night, we do, like, depending on where he's at, like if he's in range, and a really good number will turn his basil off for an hour. Like just so he's not getting, you know, even more an extra because he just got some like, basically like a Bolus with the pot change. And we just don't know how much. And so if he's high, not at a number that we want, we'll, we'll still tap it, we'll put the pot on, keep the Bazelon. And we'll do like half of a correction, like whatever that is, we still usually have to catch it. But it's not, you know, like, we know it's going to happen now. But like the way that it affected us, like we couldn't do like a pod change on the go. Or, you know, because we'd be in the car and he'd be dropping, he's a baby, like we really can't, you know, give him low treatments, a lot of times in the car plus he gets carsick, like it's this, this thing. And then, you know, we can't do pod changes, like within a certain amount of time before bed is still because of the drop, and we know what's going to happen. So it limits things a little bit. But again, like I said, it's just you know, I'm so thankful. And I just really think that that's like one of the things I really wanted to emphasize was, you know, I really just think that especially a baby, a toddler, like pushing for a pump, like as soon as possible just to save like the parents like the anguish, like you had to go through with the food coloring. And, you know, trying to Yeah, and like chasing your baby around, you know, trying to give them shots and like a toddler and a baby is different than you know, like an older kid where you can say like, Hey, we have to wait a little bit for a snack like a toddler's grazing all day long. And we'd be like, we'd either have to give him like, you know, zero carb snacks in between injections or be chasing them around all day with a needle and it's just not something. You know, I really feel like you're a toddler is hard enough, right? A baby's hard enough, like you're already going through a drastic life change
Scott Benner 43:07
having to have Kindles is a big deal. Like it just really is. You know, yeah,
Brianna 43:11
it's huge. And so I definitely would, you know, like if you're newly diagnosed, and like, I just, like, feel so sad for the people that I see in the group that like their doctors, like, no, they want us to learn how to be like MDI first or do finger sticks before they get a CGM. And yeah, you know, just in case it fails, but like, I feel like, it's kind of like saying, you know, I don't know, I just feel like, it's really antiquated. Because you can always go back and learn a new skill, that's fine. Or they could have you figure it out in the hospital. And like, you still have to do finger sticks, even with a CGM. So like, that doesn't make any sense to me. You know, like, they can have you draw up in a syringe, like, they actually had us do that in the hospital to practice and, you know, inject like, they had the little, you know, plastic thing, or like, some people have an orange or whatever that you like, inject into and things like that. So, and especially for like a small child, like, it's just so uncertain. And, you know, I just think it's just so necessary to try to, you know, arm those people with with the technology, like, because we have it, why would you not?
Scott Benner 44:18
Yeah, no, I listen, I agree. I've heard arguments for the other side. There's nothing wrong with learning how to do MDI and you should know how to do it. But yeah, but I mean, the length of time being six months or a year is right, kind of silly. At some point.
Brianna 44:30
Yeah. There's that so yeah, so we got out of the hospital like things, you know, we kind of like got to know, like, the whole Omnipod. You know, we got our whole thing down with that. You know, we had a lot of follow ups, we had the blood clot follow ups. And also one of the concerns we had whenever we got out of the hospital was, you know, he's on a Blood Center. He cannot hit his head. He can't fall or you know, like, you have to be really careful because he could get a brain bleed. And mind you, he's nine months old. He's not even walking Yeah, like when we were in the hospital. And so, you know, he's learning then to walk on this blood center. And so like, that was like a really stressful thing that we had to go through. Also, he was barely on table food. So like, you know, learning to those for like, obviously every single food was not only new to learn how to dose for, but new to see if he would even like it. Yeah, you know, and he was eating so little, you know, we had a couple of instances like early on that were like, you know, some scary lows, we had a time he was on an antibiotic where he was definitely not absorbing carbs. And it was like kind of like a middle of the night situation. And you know, he was in like the 60s and he just like we're giving him like, straight glucose Jelani just like wasn't going up. And that like just kind of stuck with me, the hospital was like really traumatic, like that whole experience with like, the nurses and doctors being scared and us being scared. And like those, those experiences just like really, really affected me for a long time. And like being really scared of lows. So obviously, like, you know, I think a lot of people like our higher to start, you know, until we like really felt more comfortable with things. I remember, you know, like, I really could not take on any more information after his diagnosis, like it was just so much and so overwhelming. And, you know, so many appointments, that like I didn't really like start listening to the podcast, until probably I would say like about nine months, like not like religiously. Yeah, I listened to some here and there. But the first one I listened to, I think, besides like maybe a couple of like, the bold beginnings are defining diabetes, but fear of insulin, because that's what I had. And like, I've now listened to that, like, multiple times, like when I kind of get back in that, you know, that mindset? Because it's like, I almost go back to it. And more recently, I've actually had like a major regression. Yeah, tell me, No, tell me, please. So like we hit a year and like things are going really, really good. Like in in Dexcom, like the GMI was down to like, actually 6.7. Like, I like that year mark was like something that I felt like would be pivotal for me. I remember you saying and actually one of my other favorite episodes is like the time that I decided to share, and like giving yourself like this timeframe, like, Okay, I'm going to be okay, after this. Or, you know, like, I'll have it kind of figured out and like, I was just like, from kinda like nine months to a year, I felt like I was doing like, amazing. Like, we were actually like having meals where he like, wasn't spiking over 180. And, you know, just in really good control. And, you know, these past couple of months, there were two times and one of them was actually after a pod change, even after we had all of this experience, but we had to change a pot in the middle of the night. And, you know, we set alarms, like we know what's going to happen, and even no matter how much we tap out the pod how much you know, if we keep the basil off that kind of thing, like it's going to happen, where he's going to drop at least some and we set an alarm, but I guess he dropped sooner than that. So like our, our other alarms or backup alarms were going off. And it was like the reading we have a sugar pixel it was the reading was like at nine minus 12 or something when we sat up and looked at it. And immediately like, you know, we go and we're like sitting him up. And like, you know, one of us went and grabbed juice and like, sat him up immediately like chi drink. And, you know, like even before doing the finger stick, but when we did the finger stick he was already like 62. And you know, he's just out asleep that you're sitting this like poor two year old up and shoving a straw in his mouth. And he like didn't want to he was crying. He's
Scott Benner 48:39
like, hey, my blood sugar's dropping really fast. And I'm asleep. What the hell yeah. Who are you people and get out of my room?
Brianna 48:46
Yeah. And so, you know, like, he drank a little bit, but then I grabbed a pack of applesauce. I'm like, squeezing that in his mouth. You know, he's pushing it away from me. You know, I told Robin like, go grab anything, literally anything. And you know, so we're like, grabbing, like we had a lollipop we had, like, we don't really have, you know, a lot of snack foods a lot. But we had happen to have Oreos, you know, we're trying to give him like anything at that point, because he wouldn't take anything. So I ended up like taking the icing out of the middle of the Oreo and just like shoving it in his mouth. Good.
Scott Benner 49:17
On the cheeks, by the way. Yeah, inside of your cheeks. And
Brianna 49:21
yeah, and so like he ended up taking like a little bit more applesauce. Like I did a finger stick, like a couple of minutes later after that, and he was 52 You know, and we just tried to get as much as we could in him because again, we were kind of at that peak time where the pod was changed and the insulin, you know, or the the insulin was at its peak. And you know, he obviously was dropping rapidly and so you know that that was like really traumatic again and kind of brought back all of those thoughts from the hospital of course. And then we had another one that was actually kind of similar scenario, but he was awake and we just kind of like waited. You know, we don't want to give him carbs too soon when he was dropping from Another change and we kind of hit it a little bit too late. And he was like in the 60s again. And he it was just like, he was just dropping really rapidly. And so just like after those two experiences, it was weird. I just like had this like, regression. Like I all of a sudden got ready to get hurt. Yeah, oh my gosh, like, completely like, I feel like I just got out of the hospital. And it's like, you know, Rob is like so even keeled. And like, he's like, the totally the one in this situation in this like, entire thing. Like, he's like, you know, kind of got the diagnosis, like, obviously, like grieved. But like, move on. This is our life. He's amazing. He's healthy. Besides, you know, besides this. And like, for me, I went through the stages of grief over and over and over again, like the time in the months after. And that's the thing, like I feel like is because like, I always wanted to be a mom, I feel like I did everything right. during my pregnancy. I was like, all organic. I didn't eat lunch meat, I you know, didn't have nitrates or nitrites. And didn't use anything with like chemicals like for, you know, body products and things like that. And it's like, I just felt like I did everything, right. And like, here I am. And this is our life now. And so that was like, really, really hard for me. You know, it's, we got to that year mark, and like, we were doing so good. And then just like recently, I like regressed. And he's like, come on, he's like, you know, like, you know, this, like, you're smart, you know, this trust, you know, like, the whole thing, like, what's going on your your motto of,
Scott Benner 51:27
you know, what's going to happen is going to happen. Know, exactly,
Brianna 51:31
like, he's like, Brianna, carbs, like juice will stop any anything, like it'll turn it around. And, you know, but like, I cannot like sometimes, like, I just, it just went out the window. So I'm like really working on that recently, I feel like I'm doing a lot better in the past, like couple of weeks. And ironically, it's like, you know, happened before this, like recording and like when I signed up to do the recording actually, like it was kind of around that year mark, like a little bit after and like, we were doing really, really good. And it's like, I'm gonna go on here and talk about like, you know, we're doing great.
Scott Benner 52:01
I'm kicking ass. Now your ass is getting kicked. Yeah, go back again. The like, I mean, are you consciously working on it? Or are like, You know what I mean? Like, what are you doing to try to get yourself back to that place?
Brianna 52:14
Just like, you know, again, like re, like I said, like, you know, going back and like listening to like that podcast episode again, all out myself. I like did an anonymous post in the group, which I love that there's that feature there. Because it's like, you know, sometimes you want to put yourself out there, but sometimes you don't, especially if you feel like it's a stupid question. But I'm like, you know, was there ever a time that like, you know, juice didn't work for you, like, or like, didn't catch the low, you know, obviously, aside from being unconscious. Like, it was just really good to hear like, like, really seasoned diabetics like saying, like, no, like, it works like a charm every time, you know, that kind of thing. And that's really helped me and just like reading other people's experiences and things like that. And just like trying to remember that, like, we've been at this for a while now. And the other thing too, that's like, been really frustrating. And our doctor like at our last visit, could really tell, we went from like time and range of like, 70 to 90%, even 100% day to like 40 and 50.
Scott Benner 53:16
That's up to him. And that's you being tested with insulin again. It's
Brianna 53:20
overtrading low sometimes, but actually, more recently, it's because we keep having pod failures. So our son is now two and he is extremely, extremely active. And I'm assuming so we get a lot of occlusions our doctor did tell us that it's more common in kids because their bodies just like healing so quickly and like cells are turning over so quickly and things like that. And like you can actually see the occlusion like when you take it off, it's white, like the cells like gathered at the tip and like basically his body tried to heal against the cannula. So we'll have that happen. And then what I assume is tunneling like from him knocking it loose, like I'll take the pot off and I can see like kind of like a bubble of insulin at the infusion site. Like like we never his doses are so small that like we never would get like wet adhesive or anything around it. Because it's not that much that's coming out. But there's insulin there when I take the pot off. And obviously like you know, we're Bolus thing and you know, things aren't
Scott Benner 54:16
working quickly. Does that happen when it gets occluded? Like how many hours is it on before that happens sometimes,
Brianna 54:23
usually a couple hours but we pretty much have gotten the motto like when in doubt change it out for sure. We actually did back in September have like a DQ DK scare. He was fine. He was like trending down all night. And like he got down to the point where you know, he was gonna go low. And I ended up like giving him a little bit apple juice and he just kind of like shot up and I'm like, okay, maybe I gave him a little bit more juice than he needed. And I actually had to go to a doctor's appointment like an hour away that morning. And so I was like getting ready. I gave him a Bolus like because I overtreated her so I thought and you know an hour went by it didn't really do Imagine like, Okay, I gave him another Bolus told Rob like, Hey, I did this, I'm leaving. And you know, I got there and I looked and is like number still was like going up. I'm like, okay, something doesn't seem right. And I'm like, you have to get him up and get him moving around because sometimes like, it kind of gets stagnant. Like, his insulin doesn't start moving until he's moving when
Scott Benner 55:18
he's sedentary it, it doesn't work as well. Yeah, like, buddy, by the way, not just not just him. Yeah.
Brianna 55:26
And so you know, I'm like, get them up getting moving around, get them drinking, you know, fluids and see, you know, if it's, it starts moving. So anyway, you know, kind of time goes by, and you know, nothing really happens. And, you know, he's making breakfast, which he pretty much has like eggs and breakfast meat or something most mornings. And I'm like, if it doesn't change, like, really soon, like, we're gonna, I was like, You need to change it out. And so he was planning on doing that already. And so he had him in the highchair, eating his eggs, and he ended up getting sick. And at that point, I'm like, calling the doctor, I was on my way home from that. And she's like, Yeah, you need to bring him in. Because, you know, obviously, he's, he's starting to vomit, his blood sugar was sky high. We changed the pot as soon as I got home, but then we took him to the ER, and, you know, they hooked him up to fluids, and did labs, and he was definitely trending into DKA. Like, at that point. I mean, like, it wasn't full blown. But his labs,
Scott Benner 56:21
you of all people, you knew exactly what that looked like, at that point. Oh, yeah, for sure. Like,
Brianna 56:25
once he once he got sick, and then probably like, a month ago, kind of a similar situation where it was like, overnight, and we fed him something that like the fat and protein definitely could have caused a rise. And like, we could have, like missed a Bolus, you know, like, because he, like on a snack or something like that kind of like coupled and, you know, after a couple hours, like, I'm like, okay, you know, when I wasn't giving him like huge bonuses, because I'm like, it's nighttime, I need to sleep, like I don't want to tank him either. And so I was kind of like going, like really conservative on it. And, you know, like, nothing was really happening. He kind of plateaued. And same thing, like I woke him up, I'm like, Okay, you need to drink something, kind of get this moving, see what happens. And he like, took a couple of sips. And then he ended up getting sick, and I checked his ketones. And, you know, they were like moderate to large. And we had an actually a new endocrinologist on call. And he was like, you know, if you guys are comfortable, like don't rush to the ER, like, you can, you know, as long as his ketones, like he might be just nauseous from the ketones itself. Yeah. And, you know, if you can get him to keep down food or liquid, and, you know, you obviously changed his pot already. Check his ketones again, in two hours. And, you know, they were they were better in two hours, you know, so it's just like, wasn't working, it was occluded. And it's just frustrating because you can't see that, you know, that it's occluded, you know, you have to wait to take it off. And it's just like one of those things you don't want to waste. You know, I mean, he's, he's using small amounts of insulin, obviously, per day. And it's like, you don't want to waste you know, a pods waste, you know, extra insulin already. I
Scott Benner 57:57
have a question like, how much insulin? What is the correction at this point? Like, say, say you see a 200 blood sugar and you want to be 100? How much insulin does that take to move? So
Brianna 58:07
a point oh, five takes about down about 30 points. So I would probably do a point one five and have to catch it with a cracker. Yeah. Or something like that. You
Scott Benner 58:15
can't test whether or not it's your cannula with an injection because you still have still way too much insulin for
Brianna 58:22
him. Yeah, like his normal Bolus is like a meal Bolus, like his biggest meal Bolus is probably like 2.5 to 3.3. And that's like his biggest meal like carb heavy meal. And, like a normal correction Bolus for him is like, point 1.1 5.2 Still, yeah,
Scott Benner 58:42
I mean, your best friend is going to be him gaining weight. Right,
Brianna 58:46
exactly. And he eats like, amazing. Like, he's such a good eater. He eats everything. And, you know, so I'm, I'm really thankful for that. But yeah, so I mean, other than that, like things, you know, are good. He's so he's such a good boy. Like, he's so like, you know, with POD changes. And, you know, the Dexcom changes, like, you know, we were really against screentime, whenever, like, early on, like, before he was diagnosed, and we were gonna, like, you know, they say to wait, and things like that. But like when we were in the hospital, and you're trying to keep a nine month old in a hospital bed for 11 days, like we had the TV on the whole time, like in the background, too, because he was like laying still in a bed for days and days. Yeah,
Scott Benner 59:26
all your hippie ideas are out the window now. Now that you're in this,
Unknown Speaker 59:30
yeah.
Scott Benner 59:33
Look at the iPad, I don't care.
Brianna 59:36
So and he's good. Like, you literally are like, here, here. It is like you can distract him. He literally I'm like, lay on your belly. He takes it. He's watching his video, whatever. He doesn't care he winces and sometimes he'll grab for like, it hurts, but he needs you know, like, he'll move on after it and I'm just like, really, really thankful that You know, that's the case because I know a lot. I think that if he was diagnosed at an older age, I think if there's any silver lining to Obviously that he was diagnosed like this is his norm. It'll be his you know, that's all he'll be that he remembers. I
Scott Benner 1:00:06
believe that. And at the same time, I don't want to freak you out. But Arden is working through a fairly significant needle phobia at 19 years old really? So yeah. So it's it popped up on her when she was like, oh, gosh, like, I don't know, eight, maybe even a little younger. Like one day for a blood draw. She just like she climbed the walls like spider man in reverse. And it was never a prop up until then. She just had like, a weird reaction. She didn't want her blood draw. She's powered through it most of the time, but aren't and like the secret about Arden is is that after she was four, when she got on on the pod, Arden doesn't get injections. Like very infrequently, like maybe once in a while you're like, let me just inject some here to see if my the pump sites the problem. But that's just not the thing that comes up for us. So as a matter of fact, the first time I and I reintroduced the syringe was probably two years after she was on a pump. And when I pulled out she goes what is that? She like, didn't even know. And now today, like modern time, right now, she's using ozempic to help her with insulin sensitivity and probably PCOS symptoms, too. And, and so she has to inject it once a week. And it is been quite a thing. Like she's done the last two on her own. And I think she's got it now. But I mean, like, kung fu fighting hands, like as you're coming at her, like, she's like you do it. I can't do it. And this did come at her. And she's like, No, wait, wait. And as you reach, she'd reach out and push away. And I'm like, Arden, the needles uncovered. She's like, I can't stop myself. Her hands are just like, they're just like, No, no, no. And then she do it. And you know, didn't love it. But then she had to go back to college. So last week, and the week before she's done it on her own. But the first time she did it, she videoed it, there's no way she'll ever let anybody see the video. But it's borderlines on hilarious. And like, you would never believe that somebody's had diabetes for this long was like, I don't know if I can do this.
Brianna 1:02:06
So it's really crazy. Like how, you know, like, like I did, like, I felt so comfortable. And like you just kind of like, go through this phase of like, you know, you didn't know it was coming like that you feel this way. And just like that, you know, and I think about like, whenever he'll get older, like I see, like, moms, you know, dads in the group talk about, like, you know, how their kid was completely fine. They were good. They accepted it. And then like, they kind of like hit these like bumps in the road where, you know, they don't have diabetes anymore. And they wish they could be normal. And one mom said, like, you know, her son was like, Mommy, why are you hurting me? And like, you know, it's just like, heartbreaking. Like, you don't want to do this. And I think like that was when I said to rob, like, what's, what's one of the things like if there's anything you want me to mention, you know, and that's like, one of the things like you have this like precious child and like you have to hurt them to, you know, save them basically, you know, and to take care of them. And it's just, you know, that's like one of the things even though he's not as bothered by it, like it still affects him like he doesn't love it. He really Dexcom Yeah, I
Scott Benner 1:03:09
know. It's really hard. Yeah, no, it's it's incredibly difficult. I mean, I've over the years, like a number of things about once we found out that my, when Arden was really young, she told our Kelly sister, that she was excited for her birthday to come because she had wished for her diabetes to go away for a birthday. So she just had to make it to her birthday before it went
Brianna 1:03:31
away. Right. And that's the that's the time I decided to share. Right? Yeah, that was when she was really
Scott Benner 1:03:35
young. Yeah, she wants we were once discussing a friend of a family whose child has got a lot of like mental deficits. And she once told me, I'd rather be him than me. Her answer was because he can't die from his thing. Right.
Brianna 1:03:52
And it's, you know, you think about that, and it's, you know, there's I think you just said and one that I listened to the other day, like, you can't think of another diagnosis where you literally, like, if you forgot about it for a couple hours or like didn't do something like you could
Scott Benner 1:04:07
Yeah, you're having a lot of trouble. Right? Yeah, that quickly. By the way. I think if you got her back here today and asked her a she wouldn't remember saying those things and be I don't think she'd feel that way anymore. So there is that to that. Listen, the best advice I can give you. I've raised two kids now, is that everything happening today? That seems really, really important. Most of it doesn't end up being
Brianna 1:04:28
right. Yeah, for sure. And it's and it feels really heavy right now because obviously we are only a year and a half into the diagnosis and also, you know, just with him and being so young and just like a difficult baby. So one of the things prior to his diagnosis, he was waking up like 10 to 15 times a night, and I was back to work and I was literally so sleep deprived. Like I remember saying to Rob I'm like I am going
Scott Benner 1:04:52
to die. Oh, I've had that feeling like in the middle of night like this is it I'm gonna have a heart attack and my head's gonna pop. Yeah.
Brianna 1:04:58
I said I am So tired and like I was trying not to keep track of how often he was waking up, but so like, I would just nursed him back to sleep. And so like, when we talk to the endocrinologist, they said like, it probably was because his blood sugar was so high, and his body kept telling him, I'm hungry, I'm thirsty, because he was so high, and then he would nurse and then he'd be even higher. And it was just this cycle of constant, I'm hungry, I'm thirsty, I'm hungry. And so like, you know, like, looking back, it's like, okay, there was like a reason for that. And like, I could never bring it, like, I'm just not the person that can like do cry it out and things like that. And I'm glad that I didn't at this point. And I was at least like, like, he couldn't help it. And like he was actually going through like a medical condition as to like, why he was waking up. So, you know, that's just like, hard. But I'm glad that I know that there's likely the cause for that. Yeah. And I also think that too, just like one of the things that I wanted to say is like, my mental health throughout all of this has, like, like I said, I went through the stages of grief. And I think that a lot of it, like, the way that you react, I guess, like after the diagnosis, like I remember, there was a post recently that got like, a lot of attention. Somebody was like, basically, like, it could be worse kind of thing. And people were like, well, that doesn't feel that way to me. And this feels like the end all be all and it's extremely heavy. And, you know, it was like a lot of back and forth. And, like, I think that there's like a lot of things that like really play into how somebody bounces back from things Oh, sure. Like some, some people are just like, so different. And so I feel like it's really important for people to understand, and that's why I really love, like, how the podcast has helped me like listen to certain people and their stories. It's like, almost like sitting in on somebody else's therapy session.
Scott Benner 1:06:45
I know, I feel like that all the time. So it's like, okay, yeah, I
Brianna 1:06:49
feel that way. Okay, somebody feels like that, that I do. And I'm not the only one that feels like this is like, you know, like, ended my life for right now. And, you know, like, I think that just some people are more resilient and like, can deal with adversity a lot better than others. And like, can just like roll with it, like, oh, this our life now could be worse. I think that like personality types, like over thinkers, worriers, you know, people that are perfectionist that like, want to have like, complete control. I was used to, like, always, like, trying to be like, work and, you know, like a perfectionist. And, you know, I always had to have things certain way. And like, you know, obviously, diabetes is not like that. So that was really hard to accept. Were some people were like, Oh, he's Hi. Correct and move on. You know, like, I do double back a lot to the why which I do it more for like learning for the next time, not because I'm like, obsessing over but like, I just don't want this to happen again, you are still
Scott Benner 1:07:38
learning it. And by the way, your his scenario and your scenario are going to change drastically more frequently than people with older kids to
Brianna 1:07:47
make sure we have to go through like all the cycles, like oh, yeah,
Scott Benner 1:07:51
yeah. Oh, no, no, yes. But not just that, like, every time he puts five pounds on, everything's gonna change.
Brianna 1:07:56
Right. Right. True. Yeah. So So then, you know, also to think about people that like, you know, their access to supplies, like, you know, I said earlier with, like, the, you know, technology and things like that, you know, can they afford it? Do they have high deductibles, like, you know, things like that, will their doctor prescribe the technologies and then, you know, like, how much your life deviated from normal when diagnosis occurred, like I read about some people, like they're in the hospital, and like, for three days, and then they go back, and, you know, their kid has to go back to school the next week, or something like that, or two weeks. And, you know, like, they're pretty much like back to mostly normal. One of the things, you know, since the dka story was so long, like we actually on day three, while we were still in the hospital, Rob's family reached out to us and we're like, you guys need to move in with us. Like, you need to be able to focus on that boy, and, like, take care of him holy. And also, like, I knew I was gonna have to take time off of work. And like, the doctors, like we're expressing, like, this is like, serious, you know, obviously, and like, we don't know, like, this is going to be completely trial and error, obviously, like I was breastfeeding, and I was gonna have to be out of work. And like, we couldn't afford to keep our place. You know, we were in a rental. For six years, actually, it was a place I absolutely loved. And, you know, we just knew that we weren't going to be able to sustain that. And like, have me be off of work. So we made a decision on day three to give our landlord notice, like, because it was at the end of the month, it was the 29th when he was diagnosed that we were going to move out, we gave her 30 days notice and we actually ended up moving in with family that was about 45 minutes away. And we lived with him for nine months. And so you know, I think that it was I think it was really really good for us and then like Sometimes though, like obviously like isolating because like we were just focused on diabetes. Yeah, and like what was going on but like we really had to be we were giving the Lovenox injections. We had our so many follow ups. We also had to see a cardiologist because one of the things he was like profusely sweating too. And I think now like it was mostly happening when he was nursing and I think as well trigger was so high. Yeah. So thankfully, like, everything was good there. But he had to have like an echocardiogram. Like, there's just so much.
Scott Benner 1:10:06
I think I think if you're not at the top of a bell tower with a rifle, you're doing good. And so yeah, seriously, like, as long as you're holding and you see, listen, don't cheap, just look straight ahead and don't look at a clock. Do you know how long we've been talking?
Brianna 1:10:21
I know. Yeah. Like, like,
Scott Benner 1:10:23
I feel like if I keep recording, you'll you can keep talking. And that it would be interesting. And I think that's a reflection of how much you've been through in such a short amount of time. But you also seem like you're doing well considering?
Brianna 1:10:36
Yeah, I think that we've gotten to a point like we, we were there for nine months, we figured out like, you know, Rob was going to go back to work. And I was going to stay home with Kai. Back in June, we moved into the place we're at now we're, you know, back on our own, which was like a huge shift, because they, yeah, they were taking care of our meals or grocery shopping, things like that. And, you know, again, so it's like, just kind of getting back to that and having the meal plan and figuring out all the carbs for that and everything. But yeah, we're overall doing, you know, well, we really are trying to focus on He's amazing. And he's, you know, here, that's what Rob always like, emphasizes like, he's here. He's, he almost wasn't, yeah. Now you gotta listen, you imagine,
Scott Benner 1:11:18
I gotta tell you, like, I'm going to have you back on in like, two years. Because you're, you're going to look back on this time. And you're going to be like, Oh, my god, is that how it was? Because it's not good. It's just not going to feel like that anymore. And you don't know that now. I mean, and I can only tell you from having talked to so many people and seeing this happen over and over again. Obviously, you're, you know, nine months old is pretty young, but still I've had enough of these conversations. You will listen back to this. I swear to you in a couple of years and be like, Oh my god, like I don't even recognize that existence anymore. Like you're not going to be like this forever. So just keep going. Keep doing what you're doing. Like pay attention. You know, be diligent, learn new stuff, shift when he shifts and you're gonna be fine. And one. Listen, let me see if I can make you feel better. I'm gonna I'm gonna look at Arden's last Bolus.
Looks like she just put it in.
Yeah, she just she just had 20 carbs. Now Arden's insulin sensitivity has changed significantly because of ozempic. But she just had 20 grams a snack, it was 2.6 units. And since then, the algorithm has given her like another unit of insulin, as her blood sugar started to go up and her Basal is jacked up right now to like 2.4 an hour because the algorithm stopping a little bit of a spike. Point is, is that there will be a day that you'll be in a pizza place or something and you'll be like, alright, just use that 10 unit Bolus, let's go. And you're gonna think back to this and be like, Oh my God, I don't recognize these two things as being the same person, same life, but it's gonna be so yeah, I
Brianna 1:12:50
feel really hopeful. I'm just amazed by the like, just since he was diagnosed, how much technology has come out since then. And like a lot of like, the trials and things like that, but like Omnipod, fives been released since then. And you know, the Isla and, you know, multiple other
Scott Benner 1:13:06
g7 since then. Yeah, seven
Brianna 1:13:09
more common. Yeah. So there's like, I feel, I feel fortunate to be like, if he could be diagnosed in any time, like, I'm thankful for it to be this time. And, you know, we definitely are super hopeful for the future. But still, yeah, I just wanted to give hope to, you know, as they told us, you know, it was less than 1% that are diagnosed under one. And so like speaking back, all the way back to the beginning of our conversation, you know, about the rare things and here we are with, you know, now my son having this, you know, Rarity, like getting diagnosed under one of this, you know, it's just kind of crazy. But the one thing that like really helped to is there's, you know, seeing other really small children and, you know, like, I remember like frantically in the hospital, like searching the search bar for like, seven months, eight months, nine months, 10 months old, you know, like, trying to see like, what came up like the results? Like how many, you know, like, if were there other any, or were there any other kids? What's
Scott Benner 1:14:09
the I know my Facebook group is? Is this exceptional? I'm not. But what what's the best one for infants? Is it diapers and diabetes? diabetes?
Brianna 1:14:17
Yeah. Yeah. And I mean, that it's not the good thing is that they're like, not really competition, because it's not it's literally just a group.
Scott Benner 1:14:24
I mean, I meant exceptional in the in because it's, it's got a specific, well, it's a specific group of people. And they all Yeah, they all I mean, this is a niche of a niche of a niche of a niche, right, like, right person diabetes, but that's the that's the group I hear about most often that people say is helpful.
Brianna 1:14:41
And I think that I found divers and diabetes first and then I found your group from there. Somebody recommended that like when I was doing these searches, like I saw that in the comments, and I actually have like a screenshot that says Juicebox Podcast and then like, I looked that up later, and that's when I found your group. And so like, it's just, you know, No again, like, even like the podcast is amazing, but I'm so thankful for like just the resource of the group that you have like all of these, like super seasoned diabetics and diabetic parents and caregivers that are like all together. And they just like collaborate and like help people with their problems, whether it be like a mental health issue in that moment, or, you know, a technology issue in that moment, or how would people know to smack a Dexcom with a spoon to get it to release when it's stuck
Scott Benner 1:15:28
when Jesus would get stuck when it first came out? I
Brianna 1:15:30
remember that. Yes. Like, there's so there's like, it comes up a lot. Like, oh my gosh, my G sexist. Like the end, like people were like smacking with a spoon. Like, it's just so funny. But you would never know that. And it's all because like your group, and you know, just everything from the podcast, and I just, I'm super thankful that we were here when we found it.
Scott Benner 1:15:52
Like, I'm glad that it's helping you. I really am. I hope it my, at my funeral, somebody is gonna say that guy made a really great Facebook group. I don't know, even I'm stunned by how valuable it is for people, like you know, I mean, because I've said it on here before, I'm happy to reiterate, I didn't want to do it. I got like, you know, people that listen to podcasts were like, We need a place to talk about the podcast, I was like, Oh, I don't want to run a Facebook group. And then I did it now today. I mean, the last time I looked, it had 45 and a half 1000 members. Alright, it does, like 125 new posts a day. 8000 likes comments and hearts. And like just teeming with, like you said, All spectrum of the rainbow people who have had experience with type one, type two, Lada gestational, like there's so many people in there, and they're very good at talking to each other. And even the instances are very few and far between. And we and I take care of them very quickly, when they happen actually sounds very
Brianna 1:16:47
true. And that's the thing, too, is like, it's cool, because, you know, I can see in the threads, like you're responding to people and, you know, just like, it's important. It is like so it's not like it's like this, you know, unattainable thing?
Scott Benner 1:17:02
Yeah, no, I'm definitely in there. Because it's just, I mean, I see it as I see it for the value that it has, like it is it is providing something that healthcare can't provide. And
Brianna 1:17:14
that's the thing is, like, people don't realize, and that's the most frustrating thing. And I just wanted to mention this. I know I've talked a lot,
Scott Benner 1:17:20
you know, you definitely have to get the hell out of here. Yeah, sorry. My wife is texting me like, Hey, is everything okay?
Brianna 1:17:28
But the fat and protein thing like that is just I can not believe. And I just wonder how many people like are struggling day long? Because they don't know. Yeah, because they don't know. And like, if I wouldn't have learned that through the group and the podcast, and like, you know, one of the threads that had like the fat protein calculator, like, we use that all the time now, because we have to, like, he eats carbs. Like, we definitely don't restrict anything per se, but like, until he's a little older, where he can be like, Yeah, I'm 100% Eating what's on my plate, like we were, you know, definitely modest with, like, not going way overboard, that we would have to make up those carbs with something huge. So, you know, like, his meals are probably like 30 carbs, usually. And really well rounded meals, but like, he eats a lot of protein. And, you know, it's like we're we notoriously get, you know, spikes two hours after meal. Like, if we didn't have that resource, like, we would just be literally like, helpless, like we'd just be correcting all the time be like, well, well, I guess we missed the Bolus. And like, we wouldn't know that it wasn't from, like the carb count, you know? Yeah. And I think that can actually be really dangerous because like, how many people don't know that it's from the fat and protein and like, they're like, reaching out to endo to say like, Hey, like, they're going high after their meals, and like, say they missed the carb count, and then it ran into the protein fat rise, and they're like, Oh, you just need to like increase your carb ratio, and then they're like tanking them every time so it's like doesn't really know what
Scott Benner 1:19:00
you don't know, you don't know what variables are impacting at that point and you're chasing ghosts and you don't know what you're doing and it creates like a turn it's a tumble effect and then
Brianna 1:19:09
really going low again before they like then start going up from the fat protein. So it's just like, if like I just feel like there should be something that's told like I know that I'm trying to give like the do not die advice and like not trying to overwhelm people but just to say like hey, and also
Scott Benner 1:19:24
good long aware Good luck with that
Brianna 1:19:28
and protein can also turn to glucose after a certain amount of time and affect the blood sugar and you know, like we think like how early on like we were doing super low carb like when he was released and Rob and I said to each other like how much of it like that we were having problems that he was staying so I was probably from these like fat and protein rises.
Scott Benner 1:19:47
You're just in the beginning of all this so interesting to hear you talk about it, really? But I'm gonna stop talking. No, don't don't don't lie. I really appreciate you doing this and spending so much time obviously it's going to be a two part episode and you Although if it was up to me, I'd put it out like this. But I'm a person who listen to the three hour podcast, but not everybody loves them. So anyway, I really appreciate you doing this, I seriously would like you to stay in touch. And I really do think I'd like to have you back on in a couple of years. Like, I know, it seems like a long time, but I think there'll be a real valuable insight from this conversation to that one. Yeah, I
Brianna 1:20:20
think it'd be interesting to see as time goes on, and like you said, the weight gain and like the Omni pod guy, obviously, we plan on to staying on, you know, pods for a long time, it's really helped our control. And I mean, not that we know what MDI is like, but, you know, like, it's it's imperative for us, I think, was his age, but it'll be just really interesting to see. As he gains weight, like, do we still have those like drops? And like, how long does that last? Like, how long do we have to battle that? You know? Well, yeah, definitely.
Scott Benner 1:20:49
You're getting there. You're doing a great job. If somebody hasn't told you already. Let me be the one to tell you. I think you guys are doing terrific. And just keep it up. And I'm so happy that the group and the podcasts have been valuable for you. Thank you. Thanks for sharing this with
Brianna 1:21:02
me. All right. Well, thank you so much for today. And
Scott Benner 1:21:06
yeah, that's absolutely my pleasure. It's all I have to say you could talk your mind two and a half hours ago. You're like, I'm a little nervous. And I was like, like an hour ago. Is she talking about here? You're not nervous for sure. Hold on a second for me. Okay. Okay.
This episode of The Juicebox Podcast was sponsored by us med us med.com/juice box or call 888-721-1514 Get started today with us med links in the show notes links at juicebox podcast.com. If you'd like to wear the same insulin pump that Arden does, all you have to do is go to Omni pod.com/juicebox That's it. Head over now and get started today. And you'll be wearing the same tubeless insulin pump that Arden has been wearing since she was four years old. A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox you spell that GVOKEGLUC AG o n.com. Forward slash juicebox. Hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Subscribing to the Juicebox Podcast newsletter is this easy. You type juicebox podcast.com into a browser. Scroll to the bottom, put in your email address. Click Sign up. Hey, kids, listen up. You've made it to the end of the podcast. You must have enjoyed it. You know what else you might enjoy the private Facebook group for the Juicebox Podcast. I know you're thinking of Facebook, Scott, please but no. Beautiful group, wonderful people a fantastic community Juicebox Podcast, type one diabetes on Facebook. Of course, if you have type two, are you touched by diabetes in any way? You're absolutely welcome. It's a private group. So you'll have to answer a couple of questions before you come in. We'll make sure you're not a bot or an evildoer. Then you're on your way. You'll be part of the family. Hey, what's up everybody? If you've noticed that the podcast sounds better, and you're thinking like how does that happen? What you're hearing is Rob at wrong way recording doing his magic to these files. So if you want him to do his magic to you, wrong way, recording.com You got a podcast, you want somebody to edit it? You want Rob? All right, kids, we're done. We're at the end. Just do me one last favor, if you can, if you could please, if you have the need or the desire for something that one of the sponsors is providing, please use my links or my offer codes. They help the show so much. And that means me you're helping me to make this podcast every day. You're helping me to support the private Facebook group. Do all the things that I'm doing. I'm not asking you to buy something you don't want or something you don't need. But if you're gonna get one of these items, use my links or my offer codes. They helped me a ton. Thank you so much for listening and for supporting. I really do genuinely appreciate it. I'll be back very soon with another episode.
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# 1262 DKA In Our Town Part 1
Brianna recounts her son Kai's diagnosis with type 1 diabetes at nine and a half months old and their family's experience with autoimmune conditions.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends and welcome to episode 1262 of the Juicebox Podcast
Well, this is a two parter. We don't do this very often, but part one is today I don't usually like date my stuff, but today's Thursday you're getting part one and tomorrow on Friday, you'll get part two. It's with Brianna the mother of a child who has type one diabetes and was diagnosed at nine and a half months old. Not going to ruin the whole thing for you right here. But it's a crazy DK story involves a helicopter mom goes to the hospital for something else. There's a whole lot going on. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. Don't forget, if you use my link drink ag one.com/juice box you'll get a free year supply of vitamin D and five free travel packs with your first order. And if you go to cozy earth.com and use the offer code juice box at checkout, you're gonna save 30% off of your entire order. Subscribing to the Juicebox Podcast newsletter is this easy. You type juicebox podcast.com and do a browser scroll to the bottom put in your email address click sign up. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes. Did you know if just one person in your family has type one diabetes, you're up to 15 times more likely to get it to so screen it like you mean it. One blood test can spot type one diabetes early tap now talk to a doctor or visit screened for type one.com For more info. Having an easy to use and accurate blood glucose meter is just one click away. Contour next one.com/juice box. That's right Today's episode is sponsored by the contour next gen blood glucose meter. This episode of The Juicebox Podcast is sponsored by ever since the ever since CGM is more convenient requiring only one sensor every six months. It offers more flexibility with its easy on Easy Off smart transmitter and allows you to take a break when needed ever since cgm.com/juicebox.
Brianna 2:27
Hi, I'm Brianna. I am mom to Kai, who is two years old. He just turned two in October. And he was diagnosed at nine and a half months old back in July of 2022.
Scott Benner 2:42
Wow. Okay, so not that long ago.
Brianna 2:45
Yep. Or almost a year and a half, exactly. Nine
Scott Benner 2:48
and a half months old year and a half with diabetes. And do you have any type one in your family?
Brianna 2:58
We do not have type one in our family that you know any anywhere that we're aware of? I do of course have hashey motives. Okay, so of course
Scott Benner 3:07
you listen to the podcast you like obviously I have a problem my thyroid
Brianna 3:12
Yeah, that's always the i It seems to come up a lot. And I found out I guess I found out more about auto immune after he was born or after he was diagnosed. And I have another autoimmune condition that was actually my first autoimmune condition. Geographic Tang
Scott Benner 3:30
Wai
Brianna 3:32
wait so I didn't realize until probably about a month ago that that was actually auto immune. But you know, I always when I was younger, I didn't realize you know that it wasn't normal, but my tongue was just kind of sensitive and I could like my tastebuds you could like they're pronounced and you can kind of like move that like they move.
Scott Benner 3:54
You know, Brianna you've done a thing here. You've said something no one else has ever said before. Or my memory is garbage but I I've never heard the words geographic tongue before hold on geographic tongue results from the loss of tiny hairlike structures on your tongue surface these structures are called puppy Elia All right pile in whatever the loss of these appears a smooth red patch was on different shapes and sizes of different shapes and sizes. Geographic tongue is an inflammatory but harmless condition affecting the surface of the zone seem harmless to you by the way?
Brianna 4:28
Yeah, I mean, it mostly has been but lately like you know, I've been running into you know, kind of my own autoimmune issues just trying to figure things out. And I saw an oral surgeon and he was the one who said You know, it was it was something that was auto immune and can flare you know, I had it since I was like eight or you know, eight or nine years old. You know, just kind of continuing on I just got done getting bloodwork done, you know for an autoimmune panel for myself. So anyways, just learned a lot like I didn't really quite understand you know what autoimmune was until my son was diagnosed with type One and then they started asking all of these questions.
Scott Benner 5:02
Do you think you're gonna come up with other issues you're having? Do you have other symptoms of things?
Brianna 5:07
I do i Yeah, spiraling from his diagnosis, you know, I mean, we're really sleep deprived and, you know, just really stressed out for, you know, the past year and a half and back in June, you know, just started kind of having some like Dizzy sensation and just like feeling off. And, you know, I had bloodwork done, you know, pretty much couldn't find anything and just continued to get worse. You know, we're really pushing into things because of the podcast, thankfully, you know, I asked them to continue because I have like every single symptom of hypothyroidism, and she did bloodwork and my TSH was like a 5.49.
Scott Benner 5:44
Mm hmm. So yeah, I was like, Can we
Brianna 5:48
please treat? And she's like, No, she's like, you know, I don't really feel comfortable. And, you know, it had been three months since my labs were drawn. And I'm, like, you know, can like just like prophylactically, like, see if it helps, you know, if she's not going to treat at that level, you know, she wanted to get additional labs. So I just got my labs back and they were 6.06 for my TSH. So she finally put me on low dose levothyroxine Oh,
Scott Benner 6:12
yeah, big difference from the five nine to the 6.06 really changed. I have to be honest with you, aren't you baffled that a guy with a pod? A guy with a podcast? Yeah. Is the one who asked to tell you something like this. And a doctor is like, Hmm, I see that you figured out what's wrong with you, but let's not do anything about it. Yeah.
Brianna 6:28
It's really frustrating. And, you know, even when I went to my family doctor the other day, she's like, Oh, that should be between two and three. So it's just crazy. And this was my endocrinologist that wouldn't treat me. So it's just crazy. Like, how how fast? It is?
Scott Benner 6:41
Yeah. Yeah. So how long have you been on it? And did you feel a relief? It's
Brianna 6:48
been probably about six days. So I can't really tell yet. But, you know, one of the biggest symptoms is just like low mood, and, you know, just like, like foggy and things like that. And so like, obviously, you know, with taking care of my son who's two, and you know, it's diabetes, and it's like, I want to feel my best. So, anyway, so here we are.
Scott Benner 7:08
I want to tell you that if there was a just if this was a just world, which is not, but if it was, married, men everywhere, would get together and build a marble statue of me. Okay. Just for the hours I've saved them of going, I don't know what's happening. Why is she yelling? And by the way, vice versa, vice versa. Like anybody, I don't care. I'm just saying, my personal experience. I was considering pushing my wife down a cliff when her thyroid was almost I was like, Why is she acting like this? But it's, it's crazy what it can do to you. Today's podcast is sponsored by the ever since CGM. Boasting a six month sensor. The ever sent CGM offers you these key advantages distinct on body vibe alerts when high or low, a consistent and exceptional accuracy over a six month period. And you only need two sensors per year. No longer will you have to carry your CGM supplies with you. You won't have to be concerned about your adhesive not lasting, accidentally knocking off a sensor or wasting a sensor when you have to replace your transmitter. That's right. There's no more weekly or bi weekly hassles of sensor changes. Not with the ever since CGM. It's implantable and it's accurate ever since cgm.com/juicebox. The ever since CGM is the first and only long term CGM ever since sits comfortably right under the skin and your upper arm and it lasts way longer than any other CGM sensor. Never again will you have to worry about your sensor falling off before the end of its life. So if you want an incredibly accurate CGM that can't get knocked off and won't fall off. You're looking for the ever since CGM ever since cgm.com/juicebox. Contour next one.com/juicebox. That's the link you'll use. To find out more about the contour next gen blood glucose meter. When you get there, there's a little bit at the top, you can click right on blood glucose monitoring. I'll do it with you go to meters, click on any of the meters I'll click on the Next Gen and you're gonna get more information. It's easy to use and highly accurate. Smart light provides a simple understanding of your blood glucose levels. And of course was second chance sampling technology you can save money with fewer wasted test strips, as if all that wasn't enough. The contour next gen also has a compatible app for an easy way to share and see your blood glucose results contour next one.com/juicebox And if you scroll down at that link, you're gonna see things like a Buy Now button. You could register your meter after you purchase it or what is this download a coupon? Oh, receive a free Contour Next One blood glucose meter do To tell contour next one.com/juicebox head over there now get the same accurate and reliable meter that we use.
Brianna 10:10
Yeah, and I, you know, Rob is my partner, you know, I've been telling him for, you know, months and he's so you know, I'm sure so tired of like me saying I'm like there's something wrong, there's something wrong. Like you said I maybe he'll feel a lot better whenever this starts to kick in. So I hope Fingers crossed. Oh,
Scott Benner 10:25
I would like a thank you card from your partner. Okay, seriously, I'm being well, I hope it helps you. I'm certain it will give you help. This, by the way, the treatment for the geographic, by the way, people don't understand how I think if you would have just written in your email, I have geographic tongue, I would have been like you're on the podcast, I don't even care about the rest of it. There's no real treatment, but like they tell you, like use a mouthwash with anti anti histamine medication to relieve allergic reaction. So you're having an alert, that's that freak you out a little bit? Or am I the only one freaked out by this sorry, from the very beginning, your kids mean everything to you. That means you do anything for them, especially if they're at risk. So when it comes to type one diabetes, screen it like you mean it. Now up to 90% of type one diagnosis have no family history. But if you have a family history, you are up to 15 times more likely to develop type one, screen it like you mean it because type one diabetes can develop at any age. And once you get results, you can get prepared for your child's future. So screen it like you mean it type one starts long before there are symptoms. But one blood test could help you spot it early, before they need insulin, and could lower the risk of serious complications like diabetic ketoacidosis or DKA. Talk to your doctor about how to screen for type one diabetes, because the more you know, the more you can do. So don't wait, tap now or visit screened for type one.com to learn more. Again, that's screen for type one.com and screen it like you mean it.
Brianna 12:07
It's just been so normal for me. So like I guess I'm not but yeah, the oral surgeon when I went to see him because I was like do I have like cancer on my tongue like, you know, what's going on? Like, why is it so painful? And he's like, Well, there's no pathology, you know, but he's like, I can give you this magic mouthwash. That's what it's called. So and it is it's lidocaine, Maalox Benadryl, I think those are the three ingredients. And they it's like compounded. So it's really hard to get actually Oh,
Scott Benner 12:33
it's for chemotherapy sores. Normally. Magic mouthwash is prescription mouthwash. It's made from a variety of medications. Yeah, I look at that. I literally thought you were making that up and you said it, but that's not real. Okay. Oh, Brianna, what a little love. Little a web URL. untangle. Okay, so are you in your 40s? Or 30s?
Brianna 12:55
And my 30s? I'm 30. Yeah,
Scott Benner 12:58
partner. Are you married too? Yeah. Yeah. So it's such a colloquial thing for people in their 30s.
Brianna 13:05
Yeah, so we are not married. And I just think probably friend sounds so juvenile, I guess like from the start, we've been together for 13 years, have
Scott Benner 13:16
a mortgage stuff like that? 15 years,
Brianna 13:19
15 years and a couple months. So yeah, it just was like something that I'm like, boyfriend, domestic domestic partner,
Scott Benner 13:29
I genuinely don't care. Like, and I'm only gonna spend three minutes on this. But why are you not married?
Brianna 13:35
I mean, we were just, I don't know, we were just together for so long. And it just kind of kept going on. And neither of us. I don't know if really felt.
Scott Benner 13:45
No, I don't. By the way, it's fine. I was just looking for some insight. Like it just not a thing that seems imperative to?
Brianna 13:51
Yeah, yeah. I mean, we were just together for a while, like he, you know, it was a dad already. Not like that has anything to do with you know, marriage, apparently. No, no, no, I mean, we were just kind of like going along. And it's like, you know, just having fun, we got together and, you know, it's like, Okay, five years went by 10 years. And then 13 years went by, and then we decided to have a baby, you know, after 13 years of being together. So it just was like one of those things. We were already like playing the part. I guess.
Scott Benner 14:21
I've been married for a very long time. And I feel like if I went downstairs right now, and I said to my wife, hey, if I waved a magic wand, we weren't married, but everything about our life was exactly the same and I asked you to marry me what would you say? And she'd probably be like, I'd be like, Get out of here. So I was just I didn't know if maybe like you made it past the like, oh my god part and you just got to the like, Can someone please wash my socks
Brianna 14:49
off? Yeah, I don't know. It was like I just was never the type that is like, I don't know, I didn't need like a ring and the wedding and Oh no, we just, you know, here we are. We're just living life and it's like time goes by.
Scott Benner 15:06
Now listen, I'm I'm okay with whatever you're good with. So you decided to make this baby and it pops out. Everything was okay through the pregnancy and the first nine months, it pops up. Did it not pop right out? Was it a bit of a slog?
Brianna 15:19
No. Just talking about the it part. Okay. Okay, so yeah, so I guess I should say that because Kai, you know, could be a boy or girl. Sure. Yeah. Yeah. So, no, we had a really, you know, healthy pregnancy. Like, I that was one thing. You know, we talked about the marriage, like, you know, I didn't necessarily need that, but I always wanted to be a mom. And, you know, he already had a son. You know, when we got together, he was, you know, five or six. You know, so I was kind of there through those years. But, you know, he actually came to me and was like, Do you wanna have a baby? It was his, his, his thoughts. So anyway, but so I was really excited. I always wanted to be a mom. And pregnancy was great. Like, I had a really healthy pregnancy, no major issues. They did have me I did have to see maternal fetal medicine, because some way my family doctor accidentally ordered a lab that she had no idea. She even ordered it and she didn't know what it was. It was called anti cardio Liping. And it was like a blood clotting lab. Okay, and it was positive. And so I had to see maternal fetal medicine because of this. And they actually started a baby aspirin because it was like the potential for miscarriage. So they started baby aspirin. And I also was on levothyroxine, because of my Hashimotos to help prevent miscarriage. So other than that, pregnancy was great. I was induced at the end. And the crazy thing about his arrival, we were actually in three hospitals, the first week he was born. So we really like after a healthy pregnancy, we really didn't have like an easy start, per se. So he was born, had a 99th percentile head. Sorry,
Scott Benner 17:05
I laughed, I was laughing at you another baby.
Brianna 17:09
And actually, like, really scary, like, the next day, they're like, you know, his head's really big to to go and ultrasound of his head, you know, because they were actually concerned about how was that I
Scott Benner 17:21
was shocked they were looking for.
Brianna 17:24
Okay. And so of course, like, I'm a new mom, you know, everything was like, good, you know, I was, you know, we're freaking out. Because, you know, that's really scary. And, you know, came back everything was fine. Send us on our way after two days, we actually had a pediatrician appointment the very next day, because of the head size. They like usually you don't have it for like two or three days after and they weren't even worried about that when we got there. They but his levels for jaundice were really high. So they sent us for bloodwork. And then they ended up sending us straight to the hospital to go for UV therapy, because his levels were so high.
Scott Benner 18:02
So put him under a plant light.
Brianna 18:04
Yeah, you went up under. And like the blue spaceship?
Scott Benner 18:09
Well, you know, at least you get put like an adult hat on him to keep it out of his eyes. Or sad or something would have been amazing. I'm sorry. Also, knowing that he's okay now makes us all like easier to joke about, but
Brianna 18:23
but go ahead. Yeah, exactly. So he had the UV therapy, everything was good. He, you know, recovered from that. We were sent home the next day. And like, I remember on the way home from there, I had a really bad headache. And I was taking, you know, Tylenol in the car on the way home, and we got home and you know, we were finally so glad to be there. And probably like, within a couple hours. I'm like, my head really still hurts. And I started seeing spots. Oh, Jesus. And I went and thankfully my OB had they were really awesome. They they do like a blood pressure cuff. Like when you get pregnant, they send out this kit and it has blood pressure cuff and all of that and you have to like report throughout your pregnancy. Anyway, I had this cough and I went and checked and my blood pressure was 166 over 110 Okay, so I knew what that meant, obviously, and I'm like, I went out and told Rob I'm like, I gotta go like I need to go to the emergency room. He's like, what? And I'm like my blood pressure. It's super high. My head hurts. I'm seeing spots. So you know here we are with our what's like three day old baby and I'm like I gotta go the ER sorry Bye. I gotta go call my mom she was there in like 10 minutes and came and got me and took me to the ER and now this is a different hospital because this is an our town. So this is now the third hospital that I'm at. You know, I explained to them whenever I checked in and like somebody from labor and delivery came down and got me right away and took me upstairs and Within 20 minutes, I was admitted, and within probably like 20 more minutes, I was hooked up to a magnesium sulfate drip. Okay, you know, and this is like during like, it's probably what a year after COVID. So protocols are still kind of in place where like things are pretty strict, and masks and all of that. And actually, so like this was not the hospital that I delivered at. And so, and they actually think had like a no visitor policy, but like, you know, I'm breastfeeding. My three day baby is a three day old babies at home with Rob, he's by himself, you know, with a breastfed baby. So like they had to make an exception and let them in. And so they were able to come in and stay. Brittany,
Scott Benner 20:41
did you have postpartum preeclampsia? Yes. Which is really rare. No kidding. It is. Yeah. Picking off rare things left and right geographic tone. By the way, so far, my I have our town seeing spots and geographic tongue as possible titles for your episode. got them written down on the side. I don't know why our town seemed nice. You're like that's the hospital in our town. I was like, it was not an old play. It never happens. Right? Like, it's very uncommon. It's
Brianna 21:10
super rare, especially because my blood pressure was absolutely on point perfect during my pregnancy. And I'm just really thankful that, you know, I was educated to know what those signs were. I was, I was super thankful that my OBS as advanced as they are, like, you know, being, you know, super prepared and having like every person who gets pregnant have a blood pressure cuff at home. So like, I just like
Scott Benner 21:34
I reveal for you really, that being in the house.
Brianna 21:36
It really is like that, you know, that honestly could have saved my life. You know, they get to the hospital. And you know, they're like kind of explaining things and like this, this, this is going to make you feel like a wet blanket is what they told me this this magnesium sulfate drip good times. Yeah, exactly. I'm like a couple days postpartum. And, you know, oh, and the other thing was, so when we were on our way to the hospital for his jaundice, like my legs were so swollen, way more swollen than during my pregnancy. Like my skin was like about ready to pop like it was it was really bad. So like, when we were at the one day appointment at the pediatrician, I was literally like, in there talking to the doctor with my legs propped up, like, above my waist, like, just like a really crazy time. So then I couldn't I actually couldn't hold Kai for the, for 24 hours then because I was on this. And it was like, basically makes you feel like you're drunk. Like probably way worse than that. I mean, I've I described it as like being in a limbo. Like, I was like, neither here nor there. Like I was just in this space. Like, I could barely talk. Like, my speech was slurred. It was just like, really?
Scott Benner 22:42
Have you ever been on morphine or been really high or something like that? Was that the vibe? You just like? Not quite conscious?
Brianna 22:49
Yeah. I mean, I've never been on morphine, or, but I do. But it was just, it was just a really odd feeling. And it was really hard. Because, you know, again, like I could see Rob sitting across the room holding chi, and it's just like, you know, you want to be able to hold your baby. You know, you're so connected. And it was just Yeah. So anyway, I, you know, the 24 hours went by and that like slowly wore off, I was able to hold him again. But then, you know, I was hospitalized for another three days. So it was four days. For me. That was actually the longest hospitalization for the whole week. So yeah, so he was born on a Saturday, and we finally got back home the following Saturday after those three hospitals.
Scott Benner 23:31
Then nine perfect months later.
Brianna 23:34
Oh my gosh, so yeah, and I mean, this kids like giving us a run for our money or this like entire time because there's been other things like we had to see a couple of specialists for some minor things, you know, just keeping us really busy. So, you know, we go home, you know, I took maternity leave, everything was great. I go back, after about three months, I worked in an ophthalmology office, I worked there for 11 years, I was actually going back in a new position as staff manager, I previously was in charge of the front desk, and, you know, so I'm new mom, you know, going back, it was really hard to leave ky. And, you know, he had issues with gaining weight from the beginning. And you know, I just always kind of questioned my supply. And, you know, we met with lactation consultants and things so like, like I said, that was like, just a really trying time. So I went back to work and it was crazy, because, you know, I was an under producer and I was actually running home at lunch to take Rob milk from my morning pumps, and then going back to work, and then, you know, it was just like the cycle so we're like super busy and you know, all of that and he would go for his checkups and he was gaining weight, but like it was really, really slow and he kind of like plateaued. Six months is when he plateaued like completely, you know, fast forward obviously to you know, he's nine months old. We it was actually the day before For my birthday, so this is, you know, July 27, we were eating dinner and he made like this weird, like, twitching. And I'm like, it looks like he like just had like, kind of like a seizure type twitch. And you know, he did it again. And it's like his body kind of like went stiff. And, you know, obviously we're really concerned. And immediately I'm like, Oh my gosh, like he's, you know, developing like a seizure disorder or something like that. Yeah. And immediately, I'm like, I know, I need to message the doctor right away. And then like, right after that, Rob said to me, he's like, do you notice that he's been breathing heavier, or faster? And without any hesitation? I'm like, Yes. And I had just nursed him like, I would usually do that whenever I got home from work. So before dinner, and I noticed that time, like, whenever I was trying to, like, he was just like, having trouble staying latched. And, you know, it was because of his breathing. And I was like, trying to put these things together. And I'm like, seizure activity, you know, is breathing like, again? Did it make sense to us, obviously. And then, you know, he did, he put them in his playpen, and he did that, like weird Twitch again, in his playpen that night. And so immediately I message the doctor, and you know, it's after hours. So he gets back to me the next morning, and we have a really awesome pediatrician who he calls us, like, right away, like you send a message, usually within like, a half hour hour, he's calling you to talk about it, which I love. You know, so he's like, what's going on? explained, you know, he's like, I'm not really like, overly concerned, like, obviously, like, pay attention to him. Like, if he keeps doing it, like, because it wasn't like, he was having a full blown seizure, it was just like, a weird, like, Twitch, and then he'd stop, you know, he was saying, like, we could schedule an appointment, you know, a certain amount of days out, etc. He's like, unless, you know, he's having like, you know, lethargy, or, you know, his demeanor is different, or his appetite, you know, things like that. And so, that was actually so the next day, it was my birthday. And I went into work late that day. And I was there for about an hour whenever the doctor had called me. And I went and immediately called Rob right away. So I should mention, he actually was stay at home dad. So I was working. We decided really early on that, you know, we wanted one of us home. And at that point, I obviously was at my job for a really long time. It was important for us, for one of us to be home with him. So he was stay at home dad, so I call him he's at home. I said, Hey, doctor said like, we don't need to come in, right away. Unless he's, you know, super tired, or he's just like, not acting like himself, or, you know, things like that. And he goes, Well, he actually just went back to sleep. And my jus, again, I'm only at work for like an hour. Yeah. And, you know, usually he would have like two to three hours in between, like his cycles of sleep. And he goes, and he drank his bottle, and he was still crying. And he's like, so I gave him more. So he had already had than, like, two bottles at that point. And I was like, alright, well, I need to call the doctor back. And obviously, let them know that. So I called him back. And he's like, Okay, you guys need to come in today then. So, I went back out to work and I, you know, sent to the girls, I'm like, Hey, I gotta go. I was only there for an hour. Like there was a birthday cake on my desk and blooms presents. And, you know. I mean, it was just like, such an odd, odd day. So anyway, I left I went home. And we had to wait a couple of hours for the doctor's appointment. So you know, we're just kind of like monitoring him and looking at him. And like, we just noticed that His breathing was, you know, kind of different. Still, it was, it was a little bit worse than it was the night before. And so that was like one of the main things we wanted the doctor to see. Yeah, so we get to the doctor, he on the way there. He was just like inconsolably crying. He never really was a car, baby. And he's sorry. He isn't either. You know, he's
Scott Benner 29:05
about to lose his gig as a stay at home dad.
Brianna 29:08
Yeah, exactly. Yeah. So it was, you know, he's, he hasn't been, you know, a good car, baby. He actually gets carsick which really complicates things sometimes for us, but he just was crying the whole way there. And, you know, it was like a 20 minute drive and it was just almost uncontrollable crying. And, you know, we see the doctor and we told him, you know, his eyes seem a little crusty. His nose is like little crossties. Or, like, you know, he's getting sick, like, obviously, he's upset. And he did like a neurologic check. He's like, you know, I don't really see anything that's like concerning and he checked his ears and all of that. And Kai was crying the whole time. So the doctor actually could not see his breathing because, I mean, he was crying, screaming and so his breathing obviously was fast and you know, Ole Miss heart rate was going a mile a minute because he was crying. And so doctor said, he's like, you know, obviously, like, with what I see, like his ear actually looks a little inflamed, his throat looks a little inflamed. They did a COVID test and a strep swab, everything was negative. So he's like, I think that he has, you know, just like adenovirus, he's like, go home rest, give him you know, lots of fluids, you can do like PD light. And, you know, just kind of get some rest. Also with this, he might start vomiting. So don't be surprised if he does. And we're just like, okay, so we leave, there was no like medications or anything given of course. So we go home. And, you know, things kind of progressed into the evening where he does start vomiting at nine o'clock. And we're like, okay, like, we expect this, because the doctor just told us that could happen. His breathing continued to get heavier. And, you know, he was kind of like, rolling around on the bed. He was like, playing a little bit. And we noticed that he, like one of his toys that was kind of heavy, but like he could, you know, pick it up before, and he like, couldn't pick it up. And that was like something that stuck out in my mind. And then night goes on. We really didn't get a lot of sleep because he was vomiting all night. And, you know, we were trying to get fluids in him, but he really couldn't keep a lot down. He really couldn't nurse, right? Anytime he did, he would, you know, come back up. And by six o'clock the next morning, he was breathing so heavy that He was like, it was like somebody ran a race, but he was sleeping. And I said to Rob, I'm like, We are either going to the emergency room, or we're going back to the doctor. So get ready. So he went and got a shower. And I'm sitting there with Kai, and he's sleeping and in my mind, like, you know, because he had just diagnosed him with a virus. I'm like, does he have RSV, I had remembered a co worker talking about her daughter's getting RSV and like their chest retractions like that it was so deep. Like you can see their ribs. And so I'm sitting here looking up on YouTube like chest retractions. And it was exactly you know, like the video. And Rob got out of the shower. And I'm like, we're going to the emergency room. I'm not even messing around with like trying to go the pediatrician them sending us to the emergency room later. Like we're going good job. Yeah, so we take him to the emergency room. It's about eight o'clock at that point. And, you know, we get there and we're like, explain, we were in the pediatrician yesterday. And that, you know, things have gotten drastically worse overnight. Like he his breathing is obviously our main concern at that point. You know, like, this just doesn't make a lot of sense. And so, you know, they start doing all of his vitals and everything. And they couldn't really find anything. And so we were kind of like going down this list of like, What could this be? And like we said, like, could he have swallowed something that like we didn't see later on, like we so they ended up doing a an x ray to check his lungs and also to check for like a bowel obstruction or something like that. Like if he did swallow something that we just like, didn't know about? Yeah, everything was perfectly clear. And then, you know, we were like, well, he was in this like, Baby Pool, like the week prior. And like, what if, you know, there was like, I mean, it was new pool water. But what if there was like a bacteria, you know, could have gotten a bacterial infection. And, you know, like, they were just kind of perplexed because, you know, and we were seeing like, a, I guess it was a nurse practitioner that was in the RPA. There was in the ER, and she's just like, you know, honestly, like, we really, you know, just aren't finding anything, like, we think you should go home, get some rest, and, you know, kind of go from there. And she left the room. And Rob and I were just talking and I'm like, I am not leaving here until they tell us why he is breathing like this. Like this doesn't make any sense. He just had an x ray wire his lungs clear, but he looks like he ran a race. And, you know, he agreed. And she came back in the room and we said that and she just kind of you know, was silent. And you know, I think understood at that point, our our concern and our frustration with you know how things were going. At that point it had been like two and a half hours that we were there. And also like while we were there like he just kind of started deteriorating. They ended up giving him like Tylenol or ibuprofen, which was bright red, and he ended up that came back up pretty much like right away to they gave him that for pain in case like he was in some type of pain from a bowel obstruction before he had the X ray. It's
Scott Benner 34:42
still no one's checked his blood sugar at this point. No.
Brianna 34:46
Nope. And at that point, you know, she said she's like, well, you know, like very nonchalant, like we can page the pediatrician on call but it's going to take a while for him to get here and You know, kind of like, it kind of seemed to like pushing us away from that.
Scott Benner 35:03
babies dying. babies dying. Get Yeah, yeah, somebody?
Brianna 35:08
Yeah, like something something is wrong, like our instinct at that point was very strong. So we said yes, absolutely doesn't matter how long it takes for him to get here. Oh, wait. And so it took a while, you know, 45 minutes to an hour for him to arrive and he walked in. And within probably like five minutes, like, you know, he was so crazy because I will never forget that moment because he just was like, very soft spoken. He came in, he just like didn't say much. And he just observed chi listened to him with a stethoscope. Chi was actually sleeping at that point, but you could see his his breathing. And right away, like, within five minutes, he like, I will never forget, like, his, like, lock with my eyes. Like he said, DKA and I'm like, what? What's that? And then he's like, diabetic ketoacidosis. And like, I'm just like, no, like, that's that That, to me just didn't make any sense. You know, obviously, like, and he left the room. And you know, we're just like reeling then like after that, because, you know, like, that was just kind of like his like first thought like, is like on his differential list. And, you know, here we are, like, obviously clueless not knowing what that means. And, you know, he kind of came back in and he had talked to the hospital, that was the bigger hospital that he would potentially be transferred to. So like the talk went from like observation, he was going to get some labs drawn, this is what you know, this pediatrician was saying, so we're going to draw some labs, we're going to send them to this hospital for just like observation overnight, we're going to send them by ambulance. So he went and consulted with his hospital and came back had, you know, they collectively decided what labs they were going to do. And they started trying to take his his blood, and they were having a really, really hard time. Obviously, he's only nine months old. So his veins are super, super small to begin with. Obviously, as we now know, he was extremely dehydrated, they had one team that was trying to get the blood at first, and then they brought in a vein finder, and another team that was you know, kind of, like the go to people, once the first girl couldn't get it. And, you know, they're trying and trying to get his blood and couldn't really get it. And after that, eventually somebody came back in with the glucometer. And they're like, we're just going to take a blood sugar, and I'm standing on the left side of the bed there and there was now I think, the third guy in there trying to get a vein on the other side. And she starts, you know, trying to take his blood and like you hear it beep and the number popped up. And I and it just said greater than sign 600 And I said did that just say greater than 600? And she said, uh, yeah, and she literally like ran out of the room. And the guy that was on the other side of the bed trying to get an IV and Tocai his hands just like start shaking. And he's like You could tell he just like got super anxious nervous like he knew like how important it was that he needed to get that line in Yeah, get that line in so it went from okay go home and get some rest through overnight
Scott Benner 38:52
by the way Yeah, yeah,
Brianna 38:56
it went from go home arrest to okay, we're going to ambulance him to literally everybody just started running around like people were flying around us and it went from ambulance to we need to lifeline him and we need to send him right now. They were obviously needed to get an IV and and right away you know, they had consulted with the hospital they said you know you need to get a fluid started with him and you also like venous blood gas they wanted and you know, like the basic DK labs and they finally finally got a line in him. And they said like, okay, Rob, you know, we're gonna have her fly in the helicopter with him so you go you know, you can grab some things at home because we were only a couple minutes away from that hospital and then head up to the other hospital which was about 45 minutes to an hour away from us. And so he left which was like the hardest thing ever I mean, you're going through this like it's chaos like your baby's here like and the his like demeanor from the time that we like came in. To that point was, I mean, he was like slumped over, he was pale, his lips were starting to turn blue, he had just deteriorate. And that's what it actually says in the notes. So like prior to, you know, the recording today, I went back and, you know, was looking at his notes, which I've done before. But you know, you're just reminded, like, whenever you read it, and you know, like, one of the things that they described is like that he deteriorated drastically in the hours that he was there, and that he was like ashen in color. And it's really hard to see things like that. So he left, I'm there by myself with chi and scared out of my mind, obviously, you're here with your nine month old baby. And, you know, your life is just like crashing, you know, in that very moment. And so finally, you know, we're going to the helicopter, supposed to be there in a couple minutes. And then all of a sudden nurse comes in, and she's like, the helicopter won't fly. And I'm like, what, and she's like, Yeah, there's, you know, storms in the area, they don't feel comfortable flying, and we're going to do what we can to try to get another helicopter here, as soon as possible. You know, and so in my mind, I'm like panicking because I knew the severity at this point, with the way that everybody was acting like, you know, and the fact that like, he needs to go now. So, here I am sitting by myself in this room, like waiting for them to come update me on, like, what's happening, and, you know, they finally come back in and they said, there's another helicopter that's kind of going to come. So waiting, they said, it's going to be like another 30 minutes or so for them to get here. So they finally got there. And, you know, they came like busting in like, they were so loud, I guess from being like, up in the air, like, talking super loud. And they were just like, really kind of have like, happy, which was, you know, comforting. You know, these are the people that were going to take your baby, you know, and we were going to fly and they had this stretcher that had basically like it looked like tin foil, like this tin foil stretcher that he was going to be placed in and they went and they put them in, and they turned around, it was three of them. And they're like, Alright, we'll see you at the hospital. And I'm like, wait a second. No, I'm supposed to fly with him with you guys. And they're like, No, we actually don't have room for you. Usually, like, we only have the two of us. But today we have, you know, so and so's training, like there's three, so we can't have any more weight on the helicopter. And Rob's gone already. He's gone already. Okay. And we had to wait for that second helicopter. So like, so much time has gone by, like it's only 45 minutes away to the other hospital like he was already almost there. So again, panicking that, first of all, now I'm stranded at the hospital. And secondly, they're going to take my baby who is barely moving away from me. And so obviously, I had to give him up and, you know, say goodbye, which was the hardest thing ever, you know, watching him be zipped up in this tin foil bag and taken out of the room. And this sweet, sweet respiratory nurse who had came, who had come in, they had started oxygen on him because like, I guess prior to realizing he was in DKA. And so she was like still in the room. She was so sweet and so supportive. She was like hugging me and you know, just kind of like consoling me. I went out and called try to call my dad. He didn't answer. Try to call my sister. She didn't answer for somebody to come pick me up. And finally I called Becky, who is a huge part of our world. So that's actually Rob's son's mom. So shout
Scott Benner 43:39
out to her for answering Yeah, yeah. Because by the way, I have this horrible idea that you're about to tell me how you have to explain all this to an Uber driver.
Brianna 43:49
Yeah, yeah.
Scott Benner 43:49
How was your evening? Well, let me tell you.
Brianna 43:54
I'll reference our town again. Our Town does not have a lot of Hoover's probably none. So, yeah, so she actually I mean, we have a really, really good relationship, you know, which a lot of people don't have. And I'm really thankful for that relationship. And she literally was working from home that day, which she usually works an hour away. So it was just like it aligned. She dropped what she was doing and was there within, you know, 15 minutes to come pick me up and drive me to the hospital, got to the hospital. And I found out actually, you know, in talking about recording today, we you know, kind of just like went back and kind of reminisced on, you know, different things and I actually found out something I didn't know is that Rob did get to hold chi whenever he first got there by helicopter. They took them out of that tinfoil bag and you know, put them in his arms and they were kind of like assessing him, I guess after the flight and so Rob's holding him briefly after they realized then that Kai's IV his vein was blown it It failed some time during the flight And so he was now no longer getting, you know, the IV fluids, they very quickly scooped him up. And, you know, we're like, we've got to, you know, take him and try to get access again. So, you know, I arrived there a couple of minutes after that, and they had him in this procedure room, which was honestly, like, I swear, I think a broom closet. It was so small. And it wasn't like, you know, like, you see, like an LR, I've, you know, been in a bunch with with my job and, you know, having surgery myself, like, I expected this to be like, you know, just, I don't know, a different looking room for procedure room. But anyway, it was it was this little closet and you could barely fit, you know, more than four people in there. And, you know, I just remember this guy being sitting there on this stool. He comes in just like this very jovial, man, he was like, Oh, he's like, do you want to see him? And I was like, Sure, you know, I'm looking at him laying on this table, and Kai's, you know, what I would say is asleep. And I was just kind of like holding his hand and talking to him. And, you know, he, he was asleep. I felt like I was in there for a really, really long time. And like, I said to Robin, like, they just like, I felt like forever. And then all of a sudden, they're like, Okay, you gotta go, like, we got to do this now. And I really think that like time stood still in that moment. Like, I think it was really probably like, two minutes that I was in there to see him, but it felt like forever, but they like quickly pushed us out, and, you know, to the room across the hall. And ironically, that was the same exact room that we were in when he was there for jaundice. So it was like kind of comforting, because we had been there before, it was this familiar place. So that part was like, okay, and we also had a family member, who are a friend of the family who worked there. And she actually was, you know, in the room talking to rob, whenever I got there. You know, we're across the hall, and they're trying to get the IV and time's going by, and time's going by, and like, we're at, like, 20 minutes and 30 minutes, 45 minutes. And, like, he's still not out. And, you know, you can see like, our door was open, and the door was closed for the most part. But people were kept like running out and running back in and running out and running back in and you saw him grab, like the supply cart and take that in. And then like you saw them take this big piece of equipment in there. And it was just like, What is going on? And again, like, we had no idea what DK was at that point. You know, like, we're just like, clueless. And so, you know, we got more anxious as time went on, like, what is happening? Like, is he okay? Is he going to be okay, like, are Is he alive? Like, and then at that point, like, you started to hear that, like, machine, whatever, it was like beeping. And I just kind of spiraled from there. Because I'm like, Oh, my God, they're reviving him, they need to revive him. Like I'm thinking it's like an ad. And they're like doing, you know, like resuscitating we're gonna stuff. Yeah, like, that's what it sounded like. And actually, like, probably too, because like, I had just taken a CPR class like a week or two prior to those that work. And so like, That sound was like, That beeping sound was like, very familiar to me. And I'm like that, that was just the first thing that came to my mind. I'm like, Oh, my God, they're reviving him. And so like, at that point, I'm like hyperventilating in the bathroom. In this room that we're in, and I'm like, feeling like I'm gonna pass out probably like, you need to lay down. So I'm like, laying down on the floor, feet above my head on like, the toilet seat in this bathroom. Like, just couldn't even breathe because I'm like, Oh my God, he's dying. You know, finally Rob comes in. He's like, Briana, he's like, he's, he's back. And so like, I jump up, and, you know, they bring him in. And, you know, he's still asleep. And you know, he's breathing fast. But they finally got the IV and, you know, time goes by finally the doctor. So the intensivist and the endocrinologist on call, came and sat with us, like, I just, again, another moment in time that I'll never forget, because, you know, they kind of like pulled up a stool, like, we're gonna be here for a while feeling. And they just kind of, like laid it all out at that point, like, and explain to us exactly like what happened. Like, and then what, what was happening, like, you know, he's in DKA. He, we think he has type one diabetes, and also the whole IV issue. So the reason he was in there so long is because they just could not get an IV into him.
Scott Benner 49:42
Did they end up putting it in his leg? Or how did they do it?
Brianna 49:45
They Yeah, they did. So they he tried four times, and it was on the fourth attempt that he finally they did a femoral IV on his right leg.
Scott Benner 49:55
By the way. Shout out to Grey's Anatomy for me knowing that
Brianna 49:59
exactly how even kidding.
Scott Benner 50:02
For all your that like sometimes Scott really seems like he knows what he's talking about. I saw that on television.
Brianna 50:09
He actually told us to that he was, he had already called his colleague, and she was on her way, because he couldn't get the IV and and she knew how to do an IV into drill into the leg bone. And that was actually what they were planning on doing. If he didn't get that fourth, try Jesus, they were going to do it's like a shunt in the bone of your leg. Yeah. So, yeah, so she was on her way. And he actually, like, once he got it called her and said, you know, like, I don't need you anymore. You know, they explained, like, the whole process and like, you know, obviously, like, we need to his blood sugar's really high. At that point, I think it was, like 533 was what they had gotten at the hospital, and they, you know, explained about DK like, we have to do this slow, and, you know, it's going to be over, you know, the course of, you know, at least 24 hours, bring it down, you know, obviously, there, we can't do it too fast. There's the risk of, you know, brain swelling and things like that. So, eventually, he ended up opening his eyes. And, you know, he's nine months, so he really can't talk a lot at that point. He's like, Mama, Dada, you know, those, you know, a couple of words here and there, you know, but he was, you know, crying he wanted us he was like, once he got stabilized, he was pretty much like inconsolable, like, he wanted us but we couldn't really like hold him yet. And the other thing, too, is like he had an eat and he had, you know, he was vomiting. So he hadn't eaten at all, you know, he's barely on table food at that point, either. So, you know, over the course of the day, his levels they were going kind of back and forth. At one point, you know, things kind of went too fast where they were his blood sugar is too low gave him glucose, you know, constantly nurses in and out with, you know, bags, like it just was so crazy to me, like seeing all of these, like bags hanging, you know, the magnesium potassium, like the saline, you know, just they were just constantly in and out. And obviously, at that point, you know, he didn't have a CGM on so they were doing like, finger sticks and taking labs, I think he was getting labs, like, every two hours. And, you know, it's just, like, really hard to see. I mean, obviously, he was really upset. And, you know, he couldn't breastfeed at that point. And, you know, that's like, not only food, but comfort. And so it's just like, really hard. And, you know, his mouth like, because he was severely dehydrated, his mouth was his lips were dry, his mouth was dry. So we were like, using one of those little sponges, you know, that they have on the little stick, and, you know, putting, trying to wet his lips, and then he was like, trying to take in his mouth and like, drink the water, which was just like, it's just, like, heartbreaking. To see your baby like that. And things, you know, progressed, and obviously, you know, things went well. And the next day like he resolved, his DKA was resolved. And it was just like really hard hearing though to that, like the doctors like you would hear the one doctor who met us the first time. He had said, he's like, I couldn't sleep last night. He's like, you know, I was up constantly checking his labs that were being drawn every two hours. So like hearing that in hindsight, like you just know how severe it was. And looking back on his records, like it's, he had noted he's like, given his age and severe de DKA. He's at super high risk for complications. So from there the next day, you know, we're like, okay, he started like perking up he was he started smiling. You know, he was saying a couple words and things like that. And
Scott Benner 53:35
I did okay with you and Rob splitting up. Because I had to do that when Arden was diagnosed when she was two like I had to leave Kelly and Arden at the hospital to go get we took art into the hospital in the middle of the night. And my wife was in a bikini and a sarong, Kylie, she had sand and grass, you know what I mean? Like it was and and so we got there like, it feels like three in the morning if I'm remembering correctly. And then they put us in the crying room when they took her away, which is just this little like cubicle with a plastic sofa where you saw because you think your baby's gonna die. And then we passed out woke up. They brought her into the I guess the PICU where Arden had like 1000 tubes and all those bags like you're saying I made it through all this. Okay, I had to leave Kelly holding Arden in that little plastic chair in her bikini with a sarong on and drive an hour and a half back to this beach house we were at because we were on vacation, right to grab supplies to come back again. Like the longest ride of my life kind of thing. Right? I did okay with that when you were talking about that. And I did okay with all the other stuff that I've lived through. And then you said the sponge on the stick and my mom had cancer and she's passed now and I remember doing that for with the little sponge thing because it feels so it doesn't feel humane. It's like a plastic stick with this little hunk of sponge and you're dipping in A water and touching their lips and almost the way the way my mom went after it was she, she just didn't even look like a person. Like she was so like, you know what I mean? Like it was right, the whole thing's horrifying. Anyway, I did. Okay, right up until that then you made me cry. I'm okay now, don't you worry. Also, by the way, you're given me a day off. You're telling a great story, and I don't need to do much. So I appreciate except for the crying. This has been delightful for me. We're on the upswing, things are coming along. We're moving in the other direction. You're having these realizations that literally cried, almost died. I mean, while it's happening, you don't think about it. But they don't put a lot of nine months old nine month olds on a on a helicopter for good reasons. You don't I mean, so you were probably you guys probably left that hospital. And I bet you most of the people like geez, I hope that baby makes it. Like, oh, yeah, sure,
Brianna 55:49
I'm sure. And whenever the doctors came in to sit with us, and that serious conversation, they mentioned, the intensivist said, like, like, I'm so glad that you know, your parental instinct kicked in. Because if you would have went home, he wouldn't have made it the night. Yeah. 100%. Actually, he actually said a few more hours.
Scott Benner 56:09
No, I was gonna say yeah, I mean, listen, I brought a I brought a two year old into an ER that was in a pretty similar situation to yours. And that we got the whole like a she almost went into a coma. Like, Oh, great. And yeah, speaking.
Brianna 56:21
Yeah. Speaking of that, so later in our hospital stay that same intensivist. I said to him, I said, so How close was he to a diabetic coma? And he just like looked at me like, are you crazy? He's like, he was in a diabetic coma. Were there so like, so when I said you know, earlier, like, oh, he was sleeping. He wasn't necessarily sleeping like he was comatose at that point off.
Scott Benner 56:46
Yeah. Geez. Wow. That's crazy. So well, now we know the now we know the name of your episode. Have you? Have you ever heard DK on a speedboat? Yeah. And the plane. Okay, on a plane? I think this one's DKA in our town,
Brianna 57:01
in our town?
Scott Benner 57:02
I think so.
Brianna 57:03
Because I mean, we're only we're only a portion of the way through so it might change again,
Scott Benner 57:08
I'm assuming overly the story could literally pick up from there.
Brianna 57:10
I mean, yeah, so and that's the thing is like, I are DKA story, like, you know, like some people I feel like some of the episodes I listened to it's like the short thing but for us, it was like this very traumatizing thing. And so much happened in from, you know, the point of hitting the hospital to discharge. So we actually were there for 11 days. So let's continue on with next day.
Scott Benner 57:44
Pick this story up in Episode 1263. Did you know if just one person in your family has type one diabetes, you're up to 15 times more likely to get it to screen it like you mean it. One blood test can spot type one diabetes early tap now talk to a doctor or visit screen for type one.com. For more info. Arden started using a contour meter because of its accuracy. But she continues to use it because it's adorable and trustworthy. If you have diabetes, you want the contour next gen blood glucose meter. There's already so many decisions. Let me take this one off your plate contour next one.com/juicebox. I want to thank the ever since CGM for sponsoring this episode of The Juicebox Podcast and invite you to go to ever said cgm.com/juice box to learn more about this terrific device. You can head over now and just absorb everything that the website has to offer. And that way you'll know if ever since feels right for you ever since cgm.com/juicebox. Alright guys, I'm out of here. Do me a favor if you need or want anything that is sold by one of the sponsors. Please use my links when you do that you are supporting the production of this podcast helping to keep it free and plentiful. And you're just helping me out. I pay my electric bill with this money. I keep the podcast going. I'm not saying buy something you don't want but I mean if you're getting an omni pod, then go to my link. You know what I mean? That kind of thing. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Tickets for the 2025 Juice crews are limited. I'm not just saying that they actually are limited. We have a certain window to sell them in and then that's it juicebox podcast.com Scroll down to the juice cruise banner, click on it. Find a cabin that works for you and register right now. You are absolutely limited by time on this one. I'm so sorry to say that it sounds pushy, but it's the absolute truth. Juice Cruz 2025 I hope to see you there. We're gonna get a tan talk about diabetes and meet a ton of great people who are living with diabetes. It's kind of going to be Like floating diabetes camp, but you won't have to sleep in a log cabin, you'll get a tan. And it's not just for adults or kids. It's for everybody. Okay, well, here we are at the end of the episode. You're still with me. Thank you. I really do appreciate that. What else could you do for me? Why don't you tell a friend about the show or leave a five star review? Maybe you could make sure you're following or subscribing your podcast app. Go to YouTube and follow me or Instagram Tik Tok? Oh, gosh, here's one. Make sure you're following the podcast in the private Facebook group as well as the public Facebook page. You don't want to miss please do not know about the private group. You have to join the private group. As of this recording, it has 51,000 members in it. They're active, talking about diabetes, whatever you need to know. There's a conversation happening in there right now. And I'm there all the time. Tag me, I'll say hi. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com
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#1261 Unexpected Personality Shift
Nicole shares her journey of managing her daughter's unexpected type 1 diabetes diagnosis and the impact it had on her family's life.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends and welcome to episode 1261 of the Juicebox Podcast.
I'll be speaking with Nicole who is the mother of a child with type one diabetes. Before her child's diagnosis, the kid experienced some pretty major personality shifts that included talking about suicide, becoming transgendered and becoming a cannibal. Nicole has celiac and diverticulitis, and she's had most of her colon removed. There's some hypothyroidism in here, as well as a great story. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. Don't forget, if you use my link drink ag one.com/juice box you'll get a free year supply of vitamin D and five free travel packs with your first order. And if you go to cozy earth.com and use the offer code juice box at checkout, you're gonna save 30% off of your entire order. I know that Facebook has a bad reputation, but please give the private Facebook group for the Juicebox Podcast a healthy once over Juicebox Podcast type one diabetes
Today's episode is sponsored by Medtronic diabetes, a company that's bringing people together to redefine what it means to live with diabetes. Later in this episode, I'll be speaking with Jalen, he was diagnosed with type one diabetes at 14. He's 29. Now he's going to tell you a little bit about his story. To hear more stories with Medtronic champions. Go to Medtronic diabetes.com/juicebox or search the hashtag Medtronic champion on your favorite social media platform. This episode of The Juicebox Podcast is sponsored by the only implantable sensor rated for long term care up to six months. The ever since CGM ever since cgm.com/juicebox.
Nicole 2:15
Hi, my name is Nicole. I am from Argyle, Texas. I have three kids, an eight year old son, a 10 year old daughter and a 12 year old daughter who is type one diabetic.
Scott Benner 2:26
Okay, hold on a second. eight year old son 12 year old daughter with type one. Yeah.
Nicole 2:33
And a 10 year old daughter as well. Gotcha.
Scott Benner 2:36
You didn't have to tell me you were in the South because a moment ago you asked your husband to bring you the piece of paper. And
Nicole 2:43
when that came out of my mouth, I knew you were gonna make fun of that.
Scott Benner 2:46
I'm not making fun of it. It was amazing. I was watching like my mic. The barber mandrill hour with my grandmother. And does anyone remember that? I'm very old. I just I don't unfortunately, there's your that's good. That means you're. You're not 50 years old. How old are you? I'm 40. There you go. That's a good age. Okay, three kids married because I heard the husband helped them with the headphones set up. Yes. Live in Texas. And your oldest has type one. When were they diagnosed?
Nicole 3:23
almost about a year ago. A year?
Scott Benner 3:27
Was it something you were expecting or completely unexpected?
Nicole 3:31
Oh, absolutely unexpected. Yeah, I had no idea. There's no I'm sorry. Nobody. Yeah. Nobody in our family has it. In our extended or anything.
Scott Benner 3:42
Yeah. Any how about with you or your husband? Any other autoimmune issues?
Nicole 3:46
I do. Yeah, I have. I am. I mean, I don't know if you would count this as autoimmune but I'm intolerant to a lot of food. I always thought that I was celiac, but I've never been diagnosed. They always say I'm not but I feel so much better when I don't eat certain things. My mom has tons of autoimmune issues. And celiac does run in our family. So
Scott Benner 4:11
you run through some of your mom's stuff. Yeah,
Nicole 4:15
I mean, it actually started when she was about my age. She had diverticulitis. She's had surgery to take out a lot of her colon, ankylosing spondylitis, interstitial lung disease are just a few of the things that she's How old is she now? She's 70. How is she doing? She's doing okay. She was diagnosed with that interstitial lung disease probably about six months ago. And that's been struggling. That has been a struggle for sure. She goes in and out about with things as you do with immune to see like immune disorders. So, but she's doing she's doing pretty good. They don't really understand her interstitial lung disease because it's not like a typical interstitial lung disease. They're seeing a lot of different and types of lung diseases now that are I don't know if it's COVID. You know, you don't want to blame it on that. But certain things that have just come about lately that are just not explained in the typical way.
Scott Benner 5:12
The internet says it's rare, a group of disorders that causes progressive scarring of lung tissue. interstitial lung disease refers to a group of about 100 chronic lung disorders characterized by inflammation and scarring that make it hard for the lungs to get oxygen. Yes, yeah, I'm sorry. Okay, well, that's your autoimmune tree right there. So,
Nicole 5:34
yeah, yeah. And then, of course, my grandmother had some stuff and my husband's grandmother's celiac and oh, so I mean, it makes sense.
Scott Benner 5:44
Yeah, no kidding. Just not a thing you would expect. Because yeah, yeah. Nobody, Nobody. Nobody. When you're growing up. No one says to you now, Mommy's got spondylitis. And. Right, right. Yeah, that's stocks, and talk a little bit about your eating stuff. What, what do you avoid that makes you feel better? And what does feel with better mean?
Nicole 6:07
Well, prior to her diagnosis, I had some bloodwork done, because I was just feeling terrible. And, in fact, some of the things that she had been feeling around the time of her diagnosis I had been feeling but you know, I have normal blood sugars. So I never was told anything about that. But I'm sure it's unrelated. But I have anxiety. And I have a hard time with gluten and dairy specifically, like I'm highly intolerant to those two things. According to my bloodwork, and just my life. I mean, when I was little, I was diagnosed as dairy intolerant. And then as I got older, I kind of just started eating whatever I wanted. And I noticed that it just really affected everything in my life. So I just cut it out. And I feel a lot better. But after her diagnosis, I went crazy and started eating everything I wanted, because I figured, like, I guess I was like depressed. And I just thought I could eat whatever I wanted at that point, because it was like nothing else matters. I gotta take care of this kid.
Scott Benner 7:04
Good god.
Nicole 7:05
Yeah. I was like, who cares about me? You know, I'll just, I just have to focus on her. So turn to do anything, which is the wrong thing to do.
Scott Benner 7:20
You don't have to say that. We all know. Yeah. But yeah, you're up in the plane. You're like, we're doing it. We have three kids, everything's fine, blah, blah, blah. Then one day, you're like, let's just crash this thing into the ground.
Nicole 7:32
Right? Like I was focusing so much on what she did and what she ate. And all of her things that I just kind of put all my needs. You know, all of what I know is right for me back in the backburner, so to speak. sounds
Scott Benner 7:44
fairly common. Yeah. Tell me what your anxiety looks like day to day.
Nicole 7:51
Before she was diagnosed, I had I mean, I guess I had just, it's hard to explain. Somewhere around puberty, I got I think maybe I've always had anxiety, just like an underlying anxious personality. And I tend to overthink things, which, obviously, in the world of type one, diabetes can be kind of a bad thing. Because I mean, as you know, it's not like you can really control it. Yeah, you can control what you can control. And you can't, we can't. So it's taught me a lot about that part of my personality in order to just calm down and take a deep breath and do your best. It's actually been kind of therapeutic for me to be honest. Because my whole life, I've spent overthinking things and kind of just ruminating too long on the things that go wrong and beating myself up about it. So that's just kind of
Scott Benner 8:44
how I was how I'm how's your energy? My energy? Low? You feel rested after you sleep all night? No. Do you? Have you ever had your thyroid checked?
Nicole 8:55
Yes.
Scott Benner 8:57
What was your TSH?
Nicole 8:58
My it was normal. I don't know the exact number. I've had it checked twice. And in fact, I just went to a hormone doctor. And she said, I have no testosterone. Like none. It didn't even show up in the test. So that's something and then I'm low progesterone. So I don't know. My you know, my mom's also I didn't say this, but she's hypothyroid. Yeah, so
Scott Benner 9:23
Nicole, you sound so yeah. Is there a way for us to while we're talking to find out what your TSH was because I'll say normal, but I'm going to tell you that over two or so probably needs medication. And if you're having hypothyroid symptoms, and you're over a two a good doctor would give you a little bit of Synthroid or something.
Nicole 9:40
Let me check while you're talking. It might take a second
Scott Benner 9:44
also Nicole, do you know how to make a hormone? No, don't pay them. I tell you something while you're looking. What? I hold that stupid joke in every time for 10 years when somebody says hormone And I realized today it's never going to stop that feeling I have until I just say at one time, so I'm saying it here was funny.
Nicole 10:06
I'm glad you got that out. Yes.
Scott Benner 10:08
I just I swear to you, I don't know how to tell you that every time someone says the word hormone, I think you know how to make a hormone. Don't pay them. That's not the worst dad joke ever.
Speaker 1 10:22
But nevertheless, yeah, so and I really want to know what your TSH is because you sound like you have hypothyroidism. You just I just sound like it. No, you do anxiety. Tire? Yeah. Does your hair fall out? Yeah, it's trouble losing weight. Yes.
Scott Benner 10:38
Are your nails brittle? Yes. skin dry?
Nicole 10:41
Yes. Yeah.
Scott Benner 10:42
Let's find that TSH number. Hold on. It's coming. Let's guess it's like a four. And your doctor said that's in range. And then that was the end of it. 1.6 Damn it. Not right. 1.6 1.6 should be okay to let you down. Damn. Did it vacillate? Has it ever jumped up and gone back?
Nicole 11:03
I don't know. I would have to go to my old doctor's records and find that which might be
Scott Benner 11:09
oh, do it on too much time. No, no. Yeah, do it on your own time. But if it's ever bounced around, I don't know be at 1.6 would be tough to get somebody but you have so many symptoms.
Nicole 11:20
I know and I have really low B 12. So I am on some shots for that.
Scott Benner 11:27
Are you gonna get some testosterone?
Nicole 11:29
I did. Actually I had my first injection last week. Oh, so what
Scott Benner 11:34
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Speaker 2 13:04
I was going straight into high school. So it was a summer heading into high school
Scott Benner 13:08
was that particularly difficult,
Speaker 2 13:10
unimaginable, you know, I missed my entire summer. So I went to I was going to a brand new school, I was around a bunch of new people that I had not been going to school with. So it was hard trying to balance that while also explaining to people what type one diabetes was. My hometown did not have an endocrinologist. So I was traveling over an hour to the nearest endocrinologist for children. So you know, I outside of that I didn't have any type of support in my hometown.
Scott Benner 13:38
Did you try to explain to people or did you find it easier just to stay private?
Speaker 2 13:43
I honestly I just held back I didn't really like talking about it. It was just it felt like it was just an repeating record where I was saying things and people weren't understanding it. And I also was still in the process of learning it. So I just kept it to myself didn't really talk about it.
Scott Benner 13:57
Did you eventually find people in real life that you could confide in.
Speaker 2 14:02
I never really got the experience until after getting to college. And then once I graduated college, it's all I see. You know, you can easily search Medtronic champions, you see people that pop up and you're like, wow, look at all this content. And I think that's something that motivates me started embracing more. You know, how I'm able to type one diabetes?
Nicole 14:24
I did I just have no, no, no, I do feel like I have more energy though. I'm gonna say that. I don't know if it's the what does that effect where you think something? Yes, exactly. But I don't, I don't think it is I have more energy. It's a little bit harder to sleep.
Scott Benner 14:39
But how are they going to track it? And do you get more they're gonna do
Nicole 14:44
a blood other blood test at two months, and every you know, so she's just giving me a little bit every week and then blood tests, see how it's working, see how I'm feeling and then go from there.
Scott Benner 14:57
And I like this for you. Okay, so maybe maybe This mimics thyroid, and I'd love to know if that's the case. I mean,
Nicole 15:03
she did say I have the antibodies, thyroid antibodies. Oh, so she thinks I'm in the beginning stages of Hashimotos.
Scott Benner 15:13
Then would a tiny little bit of Synthroid not be?
Nicole 15:16
I don't know, I could ask her I would I mean, what that yeah, because
Scott Benner 15:20
first of all, I want to be right. But secondly, I want you to feel better.
Nicole 15:23
I do to dress me.
Scott Benner 15:27
Obviously, I want you to feel better, then I want to be right. But I thought it was funny or the other way. Yeah. So yeah, I mean, it just you sound classic. And I mean, the numbers obviously, not indicative, but Right. If she says you have, if she says you have the antibodies, then would the tiniest little bit of Synthroid not be
Nicole 15:49
valuable? Yeah. Yeah, no, I agree. I mean, I can ask her and see what she says it's a
Scott Benner 15:55
short life, Nicole. And I know, I know, short to be living like that. You don't I mean, I know trust me. So tell me a little bit about how we figured out that your oldest has type one.
Nicole 16:08
She started she got sick, classic, right? She got sick. And she after her. obvious symptoms went away. She still wasn't feeling right. And I didn't know I could. She was having a lot of anxiety. And I kind of thought, well, you're like your mother, probably. But I thought it was preteen issues. To be honest. She's almost 12, she had just started a new school, she, she seemed to have grown a lot. And you know, just her body is changing. And I thought maybe she was going through something emotionally. So I took her on a little mother daughter trip. And I just wanted to talk to her about things and see if there was anything on her mind that she just wasn't telling me and that she was going through because I couldn't really pinpoint anything, you know, physically that would be wrong with her. And it wasn't until that trip that I kind of noticed that she was, you know, urinating more frequently. She just didn't want to eat as much I would offer her all the sugar and treats and she kind of just not really want it, which is strange for her and we went back and she said she actually felt better. And she went back to school and got back into soccer. And I noticed that she was kind of acting like herself again. Okay. So I think it was obviously because she was doing athletics and her blood sugar was more stabilized at that point after the holidays. And then about a month later, we decided to go on a ski trip. So we were driving through the mountains on a 13 hour ski trip. And she had to go to the bathroom. What seemed like every 30 minutes. And my husband and I were just like pulling our hair out. Just what is going on. What are you drinking back? Do you have like a trough back there that you're drinking out of? We don't know about. And we feel bad looking back on it because we were kind of I mean, we were a little mean about it.
Scott Benner 18:05
We're trying to get somewhere we just
Nicole 18:07
you have three kids in the car, you know, everybody's got it's just madness. And we thought she was just being dramatic. But she ended up peeing in her seat at one point. And that's when I looked at him and I said there is something wrong. And then we got to the house we were staying in in Colorado, and I told my mom about all the symptoms, and my mom is actually a nurse. She used to be a pediatric nurse. Not in that way. She was in the hospital doing surgeries and stuff. So she didn't know too much about it. But she said, you know, it kind of sounds like diabetes. And I looked at her like, you're effing crazy. Like there's no, there's no way like, come on. And of course, my mind was going straight to all the worst possible scenarios at that point, like cancer and stuff like that, because she had been losing weight.
Scott Benner 18:55
Okay, that is that your anxiety by the way, go and write the answer. Oh, for sure.
Nicole 19:00
Like do not give me a Google for symptoms, because and that's why I didn't Google her symptoms, because I was I knew that I would do that. You know, I knew that I would assume the worst even though it was probably nothing. Which of course it wasn't. And my dad who's like the most laissez faire person alive. He was like, Uh, I think there's something wrong, you know, and he's, he never thinks things are wrong. Like he, you know. So we actually left early from the ski trip, I got her an appointment with her PR her doctor immediately. And I said, you know, she's going to the bathroom a lot and she's lost weight. And they're like, oh, that's probably a virus. There's stuff going around. It's super, you know, blah, blah, blah. And I said, I don't know, she's drinking a lot. And that's when they're little antennas went up and they finger poked her and she was at what like 460 or something and told us to go to the hospital.
Scott Benner 19:54
So yeah, and your mom was like I got it right. Finally.
Nicole 19:58
I know. I know. Insight is You know, it's like she didn't want that. But I think she was pretty, you know, content with knowing that she knew.
Scott Benner 20:09
That makes sense. Listen to call what I know is the mother daughter, like, dynamic is fascinating.
Nicole 20:15
You're like my mom. Yeah, no, no, no, no, no, no.
Scott Benner 20:18
It's just fascinating in general. Like, I know, there's a split second where none of this was about your daughter. And all of it was about I don't want her to be right. And
Nicole 20:27
say, I told you so. Yeah, all that. Finally, I
Scott Benner 20:30
got her. Your mom's like, I got her. I knew I'd get her eventually. Anyway, well, that's Yeah. So did you go to the hospital in Colorado? Did you make the trip back? No,
Nicole 20:39
we made the trip back. So we had left a day early, so I could get her back. Because and also, I was thinking maybe it was a little bit of altitude sickness, because, you know, she was nauseous and not wanting to eat and just feeling over, you know, malaise and stuff like that. So I just thought, you know, could be explained by that as well. So, yeah, would have been nice. Yeah. Would have been nice.
Scott Benner 21:02
For sure. Yeah. But it sounds like I mean, fairness. You guys have a touch of the autoimmune. So yeah, yeah. Glad to know. I mean, all this stuff. It sucks. But it's better to know than not to know.
Nicole 21:16
For sure. Yeah. And now I do know, I mean, you know, before, I never feel like I lived such a easy life. I would say before all this and not that this is the worst thing that could ever happen to somebody. But when something like this happens, it does put things in perspective, you know, about your health and just being thankful for when everybody's healthy, you know? Yeah,
Scott Benner 21:39
certainly. I understand. Okay, so how long do you think this was happening before you caught it and ended up in the hospital?
Nicole 21:48
Looking back? I think January is when? So January of before that February, so maybe four, six weeks, something like that? Maybe Maybe, yeah, four to six weeks? And
Scott Benner 22:01
did it answer your questions about what you thought was her teenage angst?
Nicole 22:06
Somewhat? Because I know that affects your brain? You know, your blood sugar? Yeah, because that's all I thought she was going crazy. Like, I thought she needed to see a mental doctor. Really? Yeah, yeah, I thought she was because she had been learning all these new things in her life about, I mean, I don't want to say the word but like, she somehow she heard about suicide. And somehow she heard about transgenderism and things like that. And she was like, what if I do that? What if I'm an ISIS? What is going on? I mean, it's all of a sudden, she just started reeling on these questions and just thinking these thoughts that it was hard to talk her into reality. I don't know how to explain it.
Scott Benner 22:47
So not something that she had considered previously that all the sudden she was going down rabbit holes on she like
Nicole 22:52
she had talked about cannibalism. I was like, What are you doing?
Scott Benner 22:58
What she considering it? Yes. She
Nicole 23:00
was like, what if I am like, whoa, whoa, whoa, whoa, whoa, hold
Scott Benner 23:03
on. Yeah. In the span of six weeks, your daughter said, what if I'm in the wrong body? What if I'm supposed to be eating human flesh? And what else?
Nicole 23:11
And what if I commit suicide? I was like, Oh, yeah. Where
Scott Benner 23:16
you and your husband in the other room going? What if we left this one in Colorado?
Nicole 23:19
I yeah, I just I didn't know what I I was looking up therapists, you know. I had no idea what was going on. And then when her blood sugar's got stabilized, all these things just kind of dissipated. I mean, she was dealing with obviously with a whole new
Scott Benner 23:38
She's not answering any of these questions any longer. No,
Nicole 23:40
not anymore. She just she's got, you know, she's able to talk herself through logic now. I mean, before it was just yeah, there's
Scott Benner 23:49
a episode of the podcast called altered minds where Jenny and I picked through pretty specifically how high low blood sugars impact your ability to like, have cognitive stability. Yeah. And so the high or vacillating blood sugars, and then, even just different thinking than you're accustomed to? It doesn't surprise me at all. Yeah, I was gonna say the topics are just in the zeitgeist, but I don't know where she got cannibalism from that was I
Nicole 24:15
that went through me as well. I would have been like,
Scott Benner 24:18
Oh, my God, what did we do?
Nicole 24:21
She heard about, like, people marrying their own family member and was like, do what am I supposed to marry my sister? And I was like, What do you mean, I'm telling you to rabbit holes? Yeah. And I didn't understand how to even approach it because I don't think she was coming from a place where she could even
Scott Benner 24:40
understand the conversation. Right, right. Wow, that's interesting. Also, maybe don't let her have tick tock.
Nicole 24:47
No, she does not have tick tock because she doesn't have any of that stuff. And that's why because I'm I'm a mom that's like, doesn't let them do much. She
Scott Benner 24:56
doesn't have that social media and you're a little you Have a little rural Is that correct?
Nicole 25:01
Yeah, I mean, I'm pretty we go to a Christian school, a private school. And, and she I was just like what is happening? I have no idea where she's hearing these things from what you know,
Scott Benner 25:15
now that she's feeling better if I was you, I would at very least ask where you found out about cannibalism and then call it that person. Yeah. So yeah.
Nicole 25:26
Maybe Maybe they were reading Lord of the Flies or something. Who knows
Scott Benner 25:29
that something? Wow. Okay. Yeah. And then and how quickly after the insulin starts working, do you think oh, wow, her personality is completely back pretty
Nicole 25:38
quickly. I mean, once her blood sugar's got stabilized, I saw the light back in her eyes, you know? It, just, you know, that went away. And I didn't really realize her eyes were just kind of fading, you know, and she looks tired all the time. And but after her blood sugar's got him or her. Everything got her whole look and demeanor changed back to how she used to be.
Scott Benner 26:03
Well, so that's something Well, I'm glad obviously glad you figured it all that. Yeah. But talk about, then what comes next? Because your note to me is pretty simple. It's about it says newly diagnosed and the struggles that come with it, basically, like what yeah, what happened next that?
Nicole 26:18
Well, I mean, I kind of told you, obviously, I'm high anxiety, and something like that, with a person who's high anxiety can really throw you for a big loop, to say the least. So
Scott Benner 26:32
what was happening to her before diagnosis started impacting you, which by the way, I'm just going to come out on in your defense and say that we'd all be thrown off if our kid was like, Maybe we should be cannibals. Right, right. But then from there, the diagnosis, I assume is incredibly impactful for you. Can you tell me how that made you feel first off
Nicole 26:51
guilty, at first for sure that I missed it, and that I was just so naive to her symptoms and what she was going through? And then obviously, I do something that caused this, is it something they did when she was pregnant? Is it you know, like, I'm googling, of course, Dr. Google over here, doing all the things that I shouldn't be doing. But I found you pretty quickly. And that really helped. I'm going to tell you that right now. I don't want to cry. But I might, because you put reason behind things. And you You made things really simple to understand. And a time where I felt like chaos could really take control. I just listened to your podcasts like, all day, every day, I feel like just to the you know, the ones that tell you the simple things, and then I listen to other people's story, I would kind of go through the newly diagnosed stories and listen to those just to kind of feel like I wasn't alone. And that really, really, really helped. Because I didn't know anybody. And I also needed to just get my head clear on the situation and, and what I need to do in order to be the best caretaker for her. And so I wasn't sleeping, that was the thing, and I lost about 15 pounds, because I was just not eating for three months, I decided to go to the doctor and get some happy pills. I could just get through that time. And that actually really helped. And I think I probably should have been on those pills for quite a while longer than I have been.
Scott Benner 28:23
Do you think even prior to pre diagnosed cannibalism, this would have been helpful for you? Yes.
Nicole 28:29
And I because I had always been like, I can handle it. You know, I can do it. I'll just exercise eat right. There are things sometimes i There's times when we need that help. You know,
Scott Benner 28:41
I'm gonna tell you, Nicole, I think your thyroid is at the basis of Yes, I really do. Yeah,
Nicole 28:48
I wouldn't be surprised for sure. Yeah,
Scott Benner 28:51
I think you have to lean on a doc because here's what I would say. I'm not a doctor. I think that's obvious, but because I think it's obvious because I'm heavily considering calling this episode diabetic cannibal. So I think I'm not a serious person, maybe. But I know that that TSH is so low, but I wonder if maybe it's a T three problem right now. Like maybe you're not, maybe you're not converting your T four properly. Right. And or, like, I don't know, like something's that you have too many symptoms for it not to be the thing. And there are a lot of people running around thinking they're depressed and anxious. Who just have out of whack? thyroids to
Nicole 29:30
Yeah, yeah. So I could see that. I mean, I'll go back and talk to her about it and see and tell her Mr. Scott said,
Scott Benner 29:39
see the guy on the internet who has access to a computer and a microphone to me. But, but I'm glad you're feeling better, obviously one way or the other. Yeah. Yeah. But but that's interesting that it took this for you to do you think you ever would have addressed that for yourself if she hadn't been diagnosed? No.
Nicole 29:59
Why not? I think I saw it as a weakness that I needed to deal with on my own. And I think that her diagnosis allowed me to say, Okay, I literally cannot get through this time. Like, I can't function unless I do something to better my mental health. And, yeah, so I
Scott Benner 30:23
wonder all the time, not just now but bring it up now because you're, you're talking about it, but I wonder what it is about some people, that gives them the idea that there is perfection, and that somehow not like your, I don't know how to put this, like your physical meat bag body that you are not in charge of that you didn't get to pick? Like, right? If it has, you know, a system where it doesn't work quite as well. Like, how is that a? How is that a reflection on you? Like,
Nicole 30:52
how is that feeling? Yeah. How's that meet? Yeah. Right. Yeah. Cuz
Scott Benner 30:56
like you're, you're you. I mean, listen, this is a little, but you're the thoughts in your head. That's who you are. And then this thing transports you around your body. And it's like, if Mother Teresa was driving an old beat up Pinto, like would, would she not still be Mother Teresa?
Unknown Speaker 31:15
Mm hmm.
Scott Benner 31:16
But your body's a little banged up? And you're like, Oh, I'm not. I'm not. I'm failing somehow. Does that make sense? Yeah,
Nicole 31:23
it completely makes sense. It really made me want to be as a mother, as a father, I'm sure a lot of times to in different ways we sacrifice things about our body and our mental health so that we, because we think it's helping our children, right. But I realized in that moment, that I'm not gonna be able to be her caretaker and do this. If I don't take care of myself, right and get and get better. I mean, it was like, do or die situation, it maybe not physically, maybe I would have survived and all that. But mentally, I wouldn't have been the mother that she deserves, or my other two children deserve if I didn't get help. Yeah,
Scott Benner 32:03
I don't know why we don't put more importance maybe on the unit, like the family unit, meaning like, why are we so focused on a meet a guy, I'll meet a girl, I'll make a baby, I'll keep it alive. And then I'll make sure it learns something. I don't know that something is how to, you know, change a carburetor or how to like, be an accountant. But I'll make sure it learned something. And then it's got to go, right? Because that's good for it. It's got to go on its own go away. And I'm not saying that your kid should live with you till they're 35. But but the knowledge that you're there even right, even even as an adult is very valuable, for sure. And you drop in dead when you're 50. Or, you know, whatever,
Nicole 32:47
right? isn't good. Mom's going into mental institution when she's 40.
Scott Benner 32:50
I call my mom and ask her this, but she's right now going. Right? So I can't get to her. Like so you being functioning properly, you know, is is important to her as well. And we say those things by saying like, put your mask on before the person next to you. But that's not giving it its proper amount of consideration. Like you're trying to build this ever changing structure. That is, you know, coach and player, father and son, mentor and Palawan. Like, you know, all like it's not just, hey, here, I kept you alive. Get out. Right, you know what I mean? So now that you Yeah, me and your dad are gonna argue until one of us gets cancer, because that's right. I think that's how a lot of people think about their
Nicole 33:44
lives. I do too. I see that. And a lot of people and I don't want that know, my family.
Scott Benner 33:52
I don't want the last 20 years of my life just me trying to outlive Kelly. So I go beater. Yeah, yeah. Because Because if you're married for a while, that a little bit.
Nicole 34:03
And it can and a lot of people, they just go through the day and think I didn't mess up my kid too much today. Maybe I did, but whatever. I don't know.
Scott Benner 34:15
Yeah, no, I know. I just like you take care and you're taking care of yourself. I like everyone doing that. I like you feeling your best. And listen, if you're depressed or anxious, you're depressed or anxious. But if it's just because of your thyroid, I don't like ignoring it for five years while somebody goes all the numbers right. You still have the problem? Yeah, yeah, you don't I mean, so how is she dealing with the diabetes and how she tried to eat her insulin pump yet?
Nicole 34:40
She hasn't done that. But she it's a journey. She definitely has better days than others. The beginning was kind of a struggle just to for everybody to understand what you can and can't do and and how school is going to work and obviously like I said she goes to private school. Little and she doesn't have a 504 plan there. I mean, they, they take it in, but they don't legally have to follow it. Okay, so that worried me because at when we put her in that school, we obviously she had just started going there, I didn't want to take her out, because that would just be a huge change again. And obviously she's been going through a lot. So I wanted to keep her in that school. After she was diagnosed, I went in and met with the nurse, the lead nurse is a K through 12. School. So they have two nurses for the entire school. And she immediately said she needs to be on Dexcom. I follow all my type one students on their Dexcom. I haven't right here in the office, we have two nurses. I mean, she made me feel so much better. And I was shocked at that level of knowledge and understanding at the private school level.
Scott Benner 35:46
But you think that was just because they had prior experience? They
Nicole 35:49
did. They had a few other girls that are type one that are older than her so and that nurse used to work at like one of the biggest public hospitals in Dallas. And so she was pretty familiar with it and helpful. Okay, so that made me feel a lot better that she's in their care. And it still does, how
Scott Benner 36:09
did it actually work out? Like meaning? Like, did you were you getting the outcomes that that effort? indicated? Yeah. might come? Yeah.
Nicole 36:19
Yeah. So I mean, listening to you, because I mean, to be honest, the endo was not much help. I mean, then the people at the hospital I, I just thought that it was I mean, you know how it is, you're in there, you're taking in information, but you're kind of you don't, it's crazy. Yeah, it's a crazy time. But listening to you and your podcasts, and just from other people's experiences. And at that point, obviously, we were MDI, I was able to just kind of that knowledge is power, you know, and I, it made me more confident and how I cared for her. I think her first agency was like, 6.3, after diagnosis, which it was, like, 11.4 diagnosis.
Scott Benner 37:03
So can I ask, maybe I want to say not ask, I don't maybe I'm going to thank you. I'm having a bad day. Oh, no, don't feel bad for me. I do this thing, where a person like you who I've never met before, 40 minutes ago, comes on starts telling me about a thing that I've done for them, and comes to the verge of tears has to stop themselves from crying. And yet on the backside, my job is so not personal, like, half of my job is to make the podcast, right and to conceive of ways to help people. And that all goes, I think exceedingly well. And then the other half of my job is the delivery of that to people who I don't know, can't see and don't know how to find. And that has recently, in the last handful of months been thwarted by of all things. Apple, the largest distributor of podcasts in the world is apple, the apple podcast app, people who hold Apple iPhones in their hand. And they about four or five months ago changed their algorithm. And now when I go to you have no idea how much work it is just to get a person to pick up their phone and subscribe to this podcast, it is a massive amount of work right to get that accomplished. And it used to be that that person would download a certain number of episodes every time they went into the app. And that was sort of regulated by the app. And Apple decided that they didn't want you to have quite as many. So they just turned it off a little bit. And so try to imagine if every person downloaded two episodes. Now they download one episode if every person downloaded 10. Now they download five, etc, and so on. And so my ranking hasn't changed. I still exist in the podcast world exactly where I have. But people are downloading fewer episodes, because you don't recognize how much your how much of your consumption is actually driven by the app telling you here's another episode. Okay. And so now that that's gone, people listen to the episode they show up today. And they listen, today's episode, they go, okay, and then they go off and go on their way and do something else. In the past, they'd get done the episode and the app would be like, Yo, here's another one. Or you might have missed this one for two from two years ago, but it's not doing that anymore. Oh no. And so that is impacting in two different ways. So in the first way, it's that people aren't staying involved in the information long enough to have good outcomes right? not everybody, but some people, the people who needed the pat on the butt, like stay in here, listen to one more. They're drifting away. And you're also not hearing the ads as much. And because of that, like ad clicks go down. And when ad clicks go down, and advertisers go, and then when they make that noise, then suddenly Scott works at Walmart. And like, they do you see, I'm saying, Yeah, I do. And so, I sit here, I was gonna use a Yiddish term, even though I'm not Jewish, and you're from Texas, but unfocus? Because I'm upset constantly, because I'm trying to figure out a way to make more people who have your experience. And believe it or not, the impediment at the moment is someone at Apple who was like, let's just try a little bit like this. And it's really frustrating. Frustrating. Yeah, yeah. And at the same time, there are so many people competing for your time. And so little time, that it all just sounds like noise. And I very desperately don't want to turn into a person who's like, subscribe and download, tell a friend, like, please listen to like, it just it sounds so simple ish. That's just not who I am. Right. But at the same time, your experience with the podcast is a lot of people's experience. Yeah. I don't want it to fade, if that makes sense. Yeah. I want a real job. Yeah. Like, I want to be clear. Yes. No, I really, I very much don't want a real job. No. But that aside, I think this podcast is perhaps so far, the most valuable thing I've seen for people with diabetes in the life. Sure. 15 years, and I've been involved in it. And in 20 years of art and having diabetes almost 18 years. Yeah. And so it's a strange thing to have something that works. So well be knocked off course by something that has almost nothing to do with it. But yet, somehow everything to do with it.
Nicole 42:11
I know. Yeah. Some guy like you said, just deciding to make that decision can affect somebody's health. And
Scott Benner 42:19
yeah, isn't that and that's exactly my point. Like, I'm not going to tell you that I wrote a letter to Apple trying to explain that, but I am not, by the way, as I was writing it, it was like, no one's gonna read this. But like, I'm like, I know what you guys are doing. Right. And by the way, I do know what they were doing, I'm going to bend that what happened is, is that some podcasters were putting out bullshit content to bump up their download numbers, so they could ask advertisers for more money. Okay, but I'm not doing that. I'm actually putting out content. Yeah,
Nicole 42:53
I don't penalize the people who are doing the right thing, right.
Scott Benner 42:56
I'm doing everything on the up and up, delivering great content for people five days a week. And now suddenly, I'm being treated like somebody who's trying to game the system. And in the end, what that means is that someone else isn't going to make it because it's isn't going to make it to the end. The the health and happiness because I'm also an acquired tastes like you can't just listen to me once and then be like, Oh, my God, this is amazing. I kind of like, I can come off like a dick sometimes. So like, like, you gotta hang in a little bit to get the vibe. You know what I mean? Right. Anyway, it's a, it was really nice to hear you say what you said earlier. And the reason I brought this all up, is because I actually like the rest of my day today is going to be spent trying to figure out how to get people from the Facebook group to try the podcast. And yeah, it just felt like I was depressed by the idea that this is what my day was gonna be.
Nicole 43:54
I can do an ad for you. Well, that's I wish I could help you
Scott Benner 43:59
know, you're very kind and like, countless people could. Yeah, but to who?
Nicole 44:05
I don't know, maybe on the Facebook group, they can you could have them share, like, once a week or something somebody like me share their experience and point them to certain episodes that they found really helpful. I don't know, Nicole,
Scott Benner 44:19
that's a great idea. And let me tell you something, no one's gonna do that. Up first, and that's fantastic. Yeah,
Nicole 44:28
I think they would I think they would I think you're under estimating people.
Scott Benner 44:32
No, I'm I know they went I've seen a lot of people do it. It's it's just they have a life to get it. Like you can't ask them to make my thing their problem. And that's how it feels. Sometimes it's just I say it all the time. 50,000 people in that Facebook group, like 30,000 of them a day are active. If they all just right now when and tried a series That would be, we'd be exactly where we need to be. But like it's impossible to get people to, to move. I guess. So.
Unknown Speaker 45:07
I don't know. Anyway,
Scott Benner 45:09
that's my boohoo story. Anyway, from my perspective, it's I said depressed earlier that I'm not depressed about it. But it's hard to get. It's hard to get motivated.
Nicole 45:22
Oh, I understand that. Yeah. It kind of threw you for a loop. And now you have to kind of you're always reassessing things. It seems like there's nothing like in I'm sure in your world, in the podcast world, they changed something like that. And it just like you had a system. And now you got to rethink things. And it's frustrating. There's
Scott Benner 45:39
no way around it, by the way, right? Like, I watched it happen. It was back in, I want to say September 2023, the end of September, maybe. I mean, I was I was doing so well, and everything was going so great. And I was like this is it. Like, I can really blow this thing up, and blah, blah, blah. And then all of a sudden, they were like, what if this happened, click, and then I was like, Oh, it wasn't too bad. But then I realized not everybody upgraded their iOS yet. So now over the last five months, as a person picks up their phone and goes, Oh, I'm gonna try iOS 17 Now, and then they get the new podcast app, and then boom, suddenly, they're not getting the episodes as much. And they think it's me. They just think the podcast isn't coming out as much. Yeah. Because people don't really understand how they don't pay that close attention to how things work. Right? You don't I mean, so if the content is not in front of them, then they just think I'm not making it. Yeah, yeah. So anyway, that was it. I don't want to say almost threw myself off the roof. But I don't do that. I did consider self cannibalism that day. Don't do that either. myself from my foot up and see what happens. Hey, that's a way to make the news. Podcast, go viral podcast are eating his foot to be taking forever. Anyway, sorry, I apologize. I know, and then I feel bad. I really do.
Nicole 47:03
No, don't feel bad. And I mean, just take heart that you are making a difference, you know, and it's, it's not going to waste for sure. And eventually, I mean, not eventually you will, you are making a big difference. So let me
Scott Benner 47:18
say I don't think any of this is a waste and to help. And I genuinely mean to help one person is, yeah, is really, I think I would, I would say at the kingdom of heaven when I got there, okay. Like, I'd be like, I helped one person, I'd be thrilled to say that right at the end of my life. But that's not how the reality works. The reality is, you listen, you get helped. You also click on a link, those people pay my electric bill, I get to make more content. So the next person gets the listen. Like, that's, that's the cycle. And if it doesn't work that way, then seriously, then I have an electric bill. And then I have to go do something else. Yeah. And that's, that's the thing I am trying very hard for not to happen. Yeah. But it's and I can joke about I don't want a real job. But like, I'm never going to help people like this again, in my life. You don't I mean, like on the scale. So anyway, I'm going to cry now. Because no, don't get an apple. I know. And let me stick up for them for a second. I'm going to bet that Madison Avenue came to them and said, Hey, we're getting screwed on ad rates on podcast for data that seems like aren't real downloads. And they probably fixed a massive problem, and along the way, screwed over a few people who didn't deserve it. And I happened to be in that very small bucket. Yeah. So and there's no way to fix that. And they're not even ever going to know, unless one of you has diabetes and works at Apple and then
Nicole 48:54
change it in the health realm of podcasts. Who knows? I don't
Scott Benner 48:57
know yet. Well, Nicole, here's the other fix, right? A billionaire, a millionaire, with the discretional income, feels very helped by the podcast and contacts me privately and says, look, what do you make on this advertising? Let me give you 10 years worth of it, just go make the show. Right? And then that be it that's not gonna happen either. But like, all I need is enough support to pay my bills. I just want to retire one day, you know, and help people like I just would like to do that for the rest of my time. And I don't know. Hopefully, we'll figure it out. But well,
Nicole 49:33
have faith you'll figure it out. Thank you something. I mean, you're like I said we making enough difference with a lot of people. And I it's probably hard to tell from your, your vantage point a lot of times but there are a lot of people out there rooting for you, obviously. So I appreciate your work.
Scott Benner 49:50
And I do I do know that I want to be clear like I'm not even complaining. I'm just trying to lay out the like this is it and every second that gets put on this is a second, I don't put into the AI thing that I'm building for people with diabetes, or the podcast or a new series that I want to make that I can't. Like, I can't seem to start this new series, because I wake up every day thinking. I got to save the podcast. Yeah. And by the way, that's also ridiculous. Because this day, I was number 27. In medicine on the Apple podcast list, like so like, Yeah, but if you see the big picture, anytime you start sliding the wrong way. You're like, I'm three years away from this exploding. And you have to like, you have to move it in the other direction. Like, it's, you know, anyway, it's not that much fun making a podcast in case everybody thought it was.
Nicole 50:43
Is it cyclical as far as podcasts listening? I mean, sorry, this is completely off topic. But when my daughter was dying, like so in the winter, when people are diagnosed, I feel like people are diagnosed and like more people in a specific time of year, maybe that's wrong. But viruses do you think feel like more people listen to you when they're diagnosed versus when they're, you know, one two years in? Well,
Scott Benner 51:06
you are talking to the right person to Scotty stares at this, like the Torah trying to figure it out. And so January is always a great month, there is absolute truth to the idea that people think that the renewing of the year is a renewing of what they're going to accomplish. And so there's always a big push in January, I tried to drop in some incredibly interesting stuff. This year, I did the cold wind series in January thinking like, oh, maybe I can grab some more listeners. I think that worked pretty well. Then it's all around. Holidays. Okay. Yeah. And so the first holiday that screws you is Easter. The other thing that screws you is football. Yeah, the Fourth of July. And then when school's out, like in the summertime, that takes the moms away from being able to listen as much. And then they flood back after school goes back. It's almost feels like January, January and back to school feel like the same? If that makes sense. Yeah, then the lead up to November 3 week of November is always big, because people are thinking about eating
Nicole 52:12
and holidays. How am I gonna get through this?
Scott Benner 52:17
As soon as Thanksgiving comes, there's a slow drop off that goes right to the end of the year. Okay, it's very cyclical, like you can see it happened over and over again. But that's not the problem. Like I want to be clear. The amount of people listening to the show are not the problem. It's the amount of episodes that their app grabs. That's the problem. The people are still there. But the downloads have been decreased by Apple, and not by the people or their desire, but by the the app not feeding them the episodes. The episode.
Nicole 52:52
Yeah. Which is how we do things like
Scott Benner 52:55
listen, everyone wants to think they're making their own decisions. But no, when Netflix says The next episode will be up in 15 seconds. There's a little like cokehead in your brain. That's like god damn right. Let's do it again. Yes, yeah. Yeah. And if that doesn't happen, you walk away. Yeah.
Nicole 53:11
Yeah, everybody's struggling for our attention, or pining for attention in some way. So they're gonna get it somehow, might as well be you.
Scott Benner 53:19
There are times that are stronger, and times that are weaker. And again, this sounds like complaint. It shouldn't sound like complaining. If you're listening and you think I'm complaining, I don't think you're hearing what I'm saying. But I am the biggest diabetes podcast in the world by a stretch. The second one, which I don't even know what it would be is, I would imagine that if you took the next 10 and added them up, they don't do what I do in a day. That's not what scales, right. Like, it's not how you get to more and more people help more and more people. And it's not how advertisers hang in, right? So that's the entirety of the entire thing. So what all I need is people to subscribe, and then, you know, listen, that's it. And if they if listen, if it helps them, tell your doctor, like all that stuff is incredibly valuable. But you know, I don't know, I have to be honest. When I launched the Facebook group, I did it for people who asked for it. But on my end, I thought, Oh, this is going to make more podcast listeners, but I think it's possible that it didn't work that way. Really. I think the Facebook group works so well for people. It's like their crutch like they're Yeah, they almost don't need the podcast. Right? Which is interesting. Yeah, because the podcast is so much more than the Facebook group but if you feel like you're doing okay, then why do I have to go find the diabetes pockets? You won't know till you get here that I don't know if you heard the episode the other day where the last 30 minutes of it the girl talked about her like her s&m lifestyle for half an hour. You will not hear that. Oh my God, please don't do not miss that. And you're not getting that in the Facebook group. You don't like the entertainment aspect of it or me bitching about right my life or whatever.
Unknown Speaker 54:58
Anyway, oh my gosh. It's funny, it's
Scott Benner 55:00
all bizarre because, yeah, this shouldn't even be a job.
Nicole 55:03
You know what I mean? Well, I don't know why not? Because
Scott Benner 55:08
like a job should be bending something or painting something or fixing something or helping. I don't know, like, it's I make a podcast.
Nicole 55:16
I don't know, it's weird to think that there's a whole spectrum of people that are able to just talk for a living do this, but it's Yeah, but it is. It's more, it's more important than you're giving it credit for. So thank you. I appreciate it.
Scott Benner 55:31
What exactly about listening to it helped you like was it just like nuts and bolts stuff like Pro Tip series, bold beginnings, that stuff?
Nicole 55:40
I think so I think it was definitely just the control aspect of at the beginning, just getting things under control as far as understanding how certain foods work, because when you're at the hospital, they don't tell me, the nutritionist came in with a box of Froot Loops for her to figure out how to dose for the first day and nothing against Froot Loops, whatever, but my we don't feed my kids, you know, we don't feed them Froot Loops or any cereal hardly at all in the house. Anyway. And so I was kind of shocked when she came in with that. And I thought, okay, how does that, you know, I don't know, I wasn't mad, but I was like, now she's like sugar, this is what I can eat for breakfast. But that's not something that we would normally feed our kids anyway. Not that that's a bad thing. People should do what they want to do as far as that goes. But
Scott Benner 56:26
she's not eating Froot Loops to begin with. And you're in the hospital. She's
Nicole 56:30
like, shocked at like, I thought this is if anybody from hospitals are listening, you should talk to the parents before about their kids, previous nutrition before you come in with what you're going to dose for, et cetera. Yeah, I guess I just feel like getting to know that families lifestyle prior to coming in and talking to them about it can help you. I don't know why you wouldn't do that. Yeah,
Scott Benner 56:54
instead of coming in with a lollipop and a bowl of sugar and go now lick lick this. Right,
Nicole 56:59
especially, it's just a little shock. You know, it's not that she went out the normal breakfast that you would have, and then Bolus for that, you know, so. But whatever. You know, I've never, I haven't been really pleased with the entire healthcare system. As far as it comes to diabetes. What's your experience been? Just like that, like, just treating everybody the same? You know, and I understand why they do it. But there's no personalization, there's no, I don't feel like they try to get to know you as a patient at all. They're just kind of like, they go through the numbers they go through, you know, what, oh, you look good. Like, bye, you know? And if you have a question, they're like, well, she seems to be her numbers look fine. And, and it's not like, well, at this time of day, I would like it to be this or why is it not? You know, around 100 At night, like it used to be? And how can we adjust that it's just the kind of look at me, like, I'm crazy, like, I'm expecting too much, or that my kids doing a lot better than maybe other kids. So why do I care? You know, why should I worry so much? And it's not that it's just, I just have a question, you know,
Scott Benner 58:07
that fascinates me that idea of like, other people aren't doing well, either. Right.
Nicole 58:11
And it's that all the time with I feel like it's the, the endo and the nurse practitioners, you know, you're like, you're just compared to the last person they saw almost, or something. And I, I just like it to be more personalized, like I'm paying money, you know, to go see, and, by the way, we don't have typical insurance, we have Medicare. So after six months, her diagnosis isn't even covered to our insurance. So it costs a lot of money for us out of pocket to go see these doctors, and they treat us I noticed in the beginning that it's just what the insurance is want, you know, so they think you're a part of the insurance, like, what they'll cover what they'll talk to you about versus what you want to talk about, or what you don't know. Yeah. So
Scott Benner 58:57
it's incongruent, if what you need versus what they're willing to pay for. And then because that's what they're willing to pay for, that's what the doctors offer. Yep. It's only in the last 10 years really, where they be like you should meet with the nutritionist. Right. And that's because the insurance companies will cover nutritionists so then they hire a nutritionist, then they go, you should meet with the nutritionist, because we can build for that.
Nicole 59:18
I used to sell insurance. So I understood kind of it was this was pre exchange, Obamacare, you know, whatever you want to call it. So it's changed a little bit now. But it's just so much different now. It's just less tailoring more what the insurance will cover. And they just put you in that group and send you on your way. So
Scott Benner 59:38
oh, the nutritionist is here and they brought Captain Crunch with them. Right? Right. Right. Nutrition is under the captain are going to explain everything to you now. Yeah. And by the way, you're gonna Bolus for that Captain Crunch. Your blood sugar is gonna go to 300 Stay there for two hours. Come back down and we're gonna say, Hey, if you Bolus and it comes back down, it's all
Nicole 59:58
fine. I know. That's just That's exactly the experience I've had. And it's just so frustrating. So, I don't know, I literally only want to go just to get her a one seat checked and be on my way, because I don't find it helpful to talk to them. So, but you gave me that confidence. You know, I feel like a lot of people don't have that, because they just assume these doctors and whoever's in a position of authority knows best. And many times they do, you know, they're there. For like the worst case scenarios, mostly. But if you really just want to take your health into your own hands, it's so much easier to do, you know, with through people like you and technology out there that are at our disposal, that I sometimes think that they wish wasn't there.
Scott Benner 1:00:48
Oh, wait, you think they wish what Tommy?
Nicole 1:00:50
I don't know. Because I brought you up actually, at my last and the chronologist appointment. And the nurse practitioner was like, Oh, he had somebody on there. I don't know about him. And I was like, why? She said, Because I said, By the way, my daughter's numbers are good because of him. So but whatever. She said, Because he had a guy on there that did the keto diet, and I just think that's really, really unhelpful, or a bad thing for diabetics to do. And I was like, It's a guy I said, but he doesn't follow that. And he says that you should eat, you know, dose for what you eat, or you need to learn how to insulin works. That's the whole premise of the podcast. And she just kind of scoffed at me and just walked out. We're
Scott Benner 1:01:32
gonna expect people not to take a tiny sliver of information. Anyway, they want to
Nicole 1:01:40
just assume you're, that's what I'm saying. They assume that you have nothing in your mind, you know that you're that you're just like the lowest of IQ, basically, when you're in there. Yeah. And that if they if you hear any information other than what they tell you, then it could be harmful. Or some, you know, that's how I assume, right?
Scott Benner 1:01:59
And by the way, if you've been listening to the cold wind series, this this year, you might hear a lot of people who are in those positions of power telling you we don't know what we're doing.
Unknown Speaker 1:02:08
Yeah, yeah.
Scott Benner 1:02:09
So you know, it's interesting, isn't it? 1200 episodes, and they heard one person, one who did a keto diet, and they're like that whole podcast not good.
Nicole 1:02:19
Exactly, exactly. And that's how people are about all these things. Now, it's like you hear one person says one thing on one thing, and then to whatever that cliche, and now that person is associated with that one thing, and they'll never live past it. It's just ridiculous. In this
Scott Benner 1:02:35
scenario, the nurse or the person who's making the, the observation is only making it from their perspective. So she probably met somebody at some point who did a keto diet, and it didn't work well for them. She's like, Oh, he said, keto, it's not good. So here's a great example. Let me see if I can find this for you. When you want to end on some bitching here, I'll bet with a second. That's one more Christian than that. Let's get to let's see here last night. So part of my job that I don't get paid for is I have to deal with lunatics.
Unknown Speaker 1:03:09
Online,
Scott Benner 1:03:10
not often, but every once in a while. So last night, someone put up a very reasonable post about a bunch of people being diagnosed around their house or something like that a bunch of kids, right. And someone then said, like, I'm an I forget, they were in healthcare at some point. And they said, You know, I really think that there's a lot of new diagnosis from COVID. Now, let's be clear, this person was not making some like COVID conspiracy comment, right? COVID is a virus right? Viruses often precipitate type one diabetes diagnosis is in people who already have the antibodies? Well, and
Nicole 1:03:53
it's been proven, by the way, like there was a study that came out and it said, 20% increase in type one diagnosis, like since the beginning of COVID.
Scott Benner 1:04:01
Yes. And by the way, if a different virus would have happened, right mass, then diagnosis would have went up from that, because I don't have time to explain to you every time. But if you don't need to, it's just common sense. It is very common for a person who has type one diabetes, auto antibodies to have a virus, then their immune system gets bumped, puzzled, and goes after your beta cells in your pancreas instead,
Nicole 1:04:23
especially after a new virus that nobody's ever seen before. So
Scott Benner 1:04:27
being you've got diabetes, right, so this is not a this is not a it's not even sure not a controversial statement. And, you know, as soon as that happens, I have people who helped me with with my group, that post gets marked as keep an eye on it, because at some point, it's going to attract lunatics, like like a rotten banana and fruit flies, okay, like it's just, it's going to happen. And so it starts to go in the little bit of the read, you start seeing it lean and you're like, oh, here it comes. And then somebody who clearly It is coming from like a fairly tinfoil hat like perspective, you know, is starts ranting about COVID It's the vaccine and blah, blah, blah, I'm like, Okay, here we go. Like, by the way, I ain't sticking up for the COVID vaccine one way or the other, I'm just telling you, like, I see how this conversation is gonna
Nicole 1:05:19
go. Like, it's just, there's no, nobody's gonna get anywhere in that conversation
Scott Benner 1:05:24
gonna go bad quickly. Yeah. And so it starts to go bad in a sub thread of this thread, the rest of the, by the way, the rest of the post is going fine. It's this one sub thread, it starts getting kinky. And then the person gets very aggressive and starts, you know, like, snipping at people and being nasty and everything. And so when that happens, I go up to the top of the tree, and I cut the branch so that it all falls off. So I take out the initial like, comment that was made by the person who, if I'm being like, if I'm being honest, from my perspective, it felt to me that they had specific COVID beliefs that they were commingling with what was being said, so that they could make the argument.
Nicole 1:06:07
Yes, to get that out there. Yeah. Because that's what they want to talk about. Yeah. Not
Scott Benner 1:06:11
because they were trying to have a conversation about what everybody else was talking about, right? So I cut it away. And that's it. And I put a nice note with it, like, Hey, listen, you know, I think it seems to me maybe you're, you know, commingling your beliefs with what's being said, here. This isn't what these people are saying. They're not saying COVID Call us diabetes. You know, they're saying that a virus can proceed type one and like, you know, and it's common knowledge and well researched and everything. And I said in your comments are starting to feel a little antivax. And I have to be honest with you, the Facebook algorithm looks for those. Right? I don't want the Facebook police looking at us. This podcast helps a lot of people. So does this Facebook group, we don't need a problem. I can't have this kind of conversation. Anyway. There's a rule about COVID conversations for this exact reason. It's why I removed your thing. Hope you have a good night, blah, blah, blah. Right? As soon as that happens, it's 1145 on a goddamn Monday night. All right. And this is what I'm doing. Yeah. And I'm like, oh, and now why is that important? It's important because 150 new people come into the podcast group every four days. And I don't need them thinking that the group is full of conversations and arguments and ranting and raving. Right? Right? Because it's a very small part of what happens. My group is really good. And so like, so we trim that away. Okay, well, 54321, here comes the direct message from this person. You know what I mean? And right away, you know, your liberal agenda. Oh, Lord, my liberal agenda.
Nicole 1:07:48
Oh, you shouldn't refer you need to refer that person over for my happy meds.
Scott Benner 1:07:55
Oh, my God, actually. So one of the people that helped me with the board was like, this is usually the Saturday night drinky group. This isn't Yeah. And so. So listen, I'm socially liberal in my thinking as much as that I hope that everybody gets a fair chance. And I would like them to, but I'm fairly conservative financially and like with other things, and I've never told you what I think of the COVID vaccine or anything like I've never spoken about it at all. Like, you don't really know what I think about that. Right. Right. And, and yet this person right away is like, you have disagreed with me. You err on the side? Yeah, yeah. If you don't like what I said, you're, you have a liberal agenda. And I was like, or I have an agenda where I don't let crazy people rant and rave, right? I don't think this person is crazy because of their opinion. I genuinely don't, I don't know that their opinions right or wrong. I think they're crazy because of the crazy way they're talking
Nicole 1:08:55
right online to a bunch of strangers. And it's, you're not going to change anybody's. Yeah, I know, not
Scott Benner 1:09:02
because of what they were saying. Yeah. Well, they were saying it. Now I'll take a deep breath, because this isn't going to end. I'm gonna get another direct message back. And it's going to be telling me I've been through this so many times the call, I actually know how it's going to go. This next part is going to tell me about all the wrong things that everyone else said. And then like clockwork, it comes. There's literally a comment that says this, and blah, blah, blah, and that's not right. And this has admitted and I'm like, oh my god, it's midnight now. And I'm like, okay, and then I don't respond because I'm like, What am I going to do? Right? And then I know that the next step is coming. Do you know what the next step is? No personal group. No, no personal attacks, I'm leaving this group. But first, don't just leave.
Nicole 1:09:50
Let me tell you real quick and then I'm gonna leave first of all,
Scott Benner 1:09:52
to insult you in every way that I can conceivably think of. And then I'm gonna leave. It's not His personal like, like hits, like you're pathetic. Which by the way, that's a that's a quote. You're pathetic. This is nonsense. This group has been falling apart for years. Like it's the biggest, most active valuable diabetes Facebook group in existence. Yeah, it's falling apart. I knew it. But now I'm out. Because now you said, right. I can't like and I'm like, Oh my God. And, and
Nicole 1:10:27
I'm like, sorry for you guys. I feel sorry for those people to be honest. I mean, I did. You almost like, there's, there's no winning that, like, obviously, that's what they want. But they're not going to do it in any part of their life. I mean, they're just going to, as soon
Scott Benner 1:10:41
as I tried to do the right thing, which was competently explain what was happening and why this was really about the health of the group and not about this conversation at all. As soon as I was willing to go back and forth. Oh, my God, I was like, I know this isn't gonna go well. And it certainly did. I enjoyed being called pathetic at midnight and being told that the effort I've been putting in for the last 10 years that has helped you and many people like you, was absolutely just disgraceful and falling apart. I was like, Oh, my God, now I let that run off me. Like I honestly, yeah, if you and I weren't talking about today, I don't think I'd ever bring it up. But it's just, it's another part of my job. That, you know, no, one's compensating me for, like, like, it's not like, like, I wanted to be asleep. I want to be clear. But you know, and anyway, that's it's fast. But But I brought it up, because it's the same mechanism. As the nurse who said, I heard the words, keto. I'm out and didn't
Nicole 1:11:46
even ask me about how, how did you achieve, you know, I can get that point was like a 5.9. A one C? You know, the second time we nothing about this guy has really helped me. It's just that one thing I heard about him gives me, you know that he can't be that great.
Scott Benner 1:12:05
Yeah, cuz yeah, you sat there and said, I have a five nine, a one C with my daughter who's 12 years old. This is not common. MDI, you're right. All this stuff, I wanted you to know that this is where I got this information from and why I'm doing so well. And that person basically turned and said he's got a liberal agenda.
Nicole 1:12:23
And I honestly, I think that it's these people like, not everyone, I'm sure there's wonderful nurse practitioners and endos out there, of course, and of course, they're held to systems that I mean, they work for corporations, most of them, so they have to do what they are told, you know, and they don't have a lot of time to spend with a patient. I understand all these things. But when somebody's telling you something that works for them, listen to them. I mean, give them give them a moment to explain how they achieved that. And you're not helping them, you're not making them want to come to you for anything, the if you just kind of throw that
Scott Benner 1:13:00
away. Yeah. So she, I'm assuming she I'm sorry. Yeah. So so she is incapable of helping you to this success on her own, but does not want to hear about how you accomplish it. Right. So is her goal to help you? Or is her goal to keep you reliant on her?
Nicole 1:13:20
I honestly, I look at it almost like a pyramid. It's like the worst you're doing the better a patient you are. I hate to say that, but sometimes I feel that way. And I don't know. Like, maybe they're more willing to help you if you're having a hard time. But but that's not how it should be. You know? So
Scott Benner 1:13:38
you were about to say it's like a pyramid scheme, weren't you?
Nicole 1:13:43
I hate to say that, but sometimes that healthcare, I mean, it kind of is so do look at it.
Scott Benner 1:13:48
But it sucks. But yeah,
Nicole 1:13:52
I don't think that they're wanting you to stay or keep up, stay unhealthy are bad things to happen. I'm not saying that. I just think that it's not even the way that it set up. The corporations in the system? I don't think it's meant to. For everyone. Yeah, they don't know how to say it. But I think that if you're a capable person, you're able to take care of yourself outside that system. Um, of course, you need it for some reasons, you know, go get your blood work, blah, blah, blah. But it's just a blessing that we have people like you that are able to take us to that next step, you know, and before I can't even imagine I say this all the time. And I'm sure I'm not the only one. But can you imagine 30 years ago growing up with this, and not having all these resources and technology. I thank God every day for that. Because, I mean, I literally wouldn't be able to do any of this or have faith that my kid could go out there in the world and deal with this disease and stay healthy.
Scott Benner 1:14:52
Well, I'm genuinely happy that it's been valuable for you sincerely. Yeah. Yeah. And I appreciate you being willing to say it and being willing to say it to the doctor and Oh, I'll
Nicole 1:15:00
say it over and over again. You're very nice. Stop me.
Scott Benner 1:15:02
I appreciate it very much. So I appreciate you being part of my liberal agenda today. Doesn't matter who I vote for. Isn't that interesting? You don't mean like,
Nicole 1:15:13
yeah, no, it's it's crazy that the leap that it takes to get, because, look, I'm conservative. But and I'll tell you, I'll be the first one to tell you like, I none of my family took the vaccine, you know, whatever. But I don't care if you did, and I don't care if you have opinions, you know, whatever. But the second you start getting testy with people and mean about it. Yeah, then it almost looks like you're not not confident in what you believe. enough to just say, like you said, the post wasn't even about that. It was about Yeah, COVID can make, you know, whatever. Maybe the two things can be true
Scott Benner 1:15:52
at once. You know, I can't go to sleep, by the way, while you're letting your crazy out on my board. Right. Right. It was attacking. And by the way, if you point that out to those people, they go, No, I'm not. I'm just telling them what's right. And what's wrong. I'm like, Oh, my God, like, dial it down a little bit. Like, I don't know, like, I just I always see those people. And I'm like, Oh, my God, your spouse must just be like hiding in a closet somewhere, right?
Nicole 1:16:16
That's what I was thinking when you were telling me about
Scott Benner 1:16:20
going yell at somebody who loves go yell at somebody who loves you leave me alone? Or just say what you think and move on? And move on? Exactly. There are conversations happening in that group constantly with people who disagree with each other. Right? Lovely people who have differing opinions who list their opinion, and then move on. Don't come back every five seconds going, Oh, yeah. And this and this, and this, and you and this, and what are you doing? Oh, so you're a healthcare professional putting things in quotes. I'm like, Oh, my God. Listen, if you want to, if you want to see the other side of it, you send your kid to a Christian school, I assume you're a fairly religious person, you call yourself conservative. I've been completely clear on this podcast a number of times, I don't believe in God.
Nicole 1:17:02
Right. Yeah, I know, you know, yeah, we'll get your
Scott Benner 1:17:06
diabetes information here. Like, means like, and
Nicole 1:17:10
the thing is, is like, you can still be helped by somebody who doesn't believe the same things that you believe. I mean, and if you think that they have to believe the vaccine was created to kill people, or whatever I don't know, like, that doesn't take away from what their, their core, you know, what they're doing and what they're helping with. And, and like I said, three things can be true at the same time, but it doesn't matter what you think about that specific subject, you are here because your kid has diabetes, and you want to get them better or yourself better, or you want to, you know, live a more complete and healthy life. Yes.
Scott Benner 1:17:47
Obviously, the vaccine was developed to test the populations willingness to fall in line, so that later we can be subjugated. I
Nicole 1:17:56
love conspiracy theory as much as the next person, trust me, I could get I could go down a rabbit hole, but I have to stay attached to realities. Listen,
Scott Benner 1:18:06
they're not not fun conversations. But yeah, you can't actually figure out if they're true or not.
Nicole 1:18:11
I mean, it's a thing and to argue as if it is true. And if you don't believe the same thing, then everything you're saying is invaluable.
Scott Benner 1:18:20
Nicole, I believe you understand my position. Yeah. Like, I'm not telling you, you're wrong. I'm telling you. What are we doing right now? Like, talk five people in a Facebook thread into this? Okay, you got them. Now what?
Nicole 1:18:33
But it's funny that you related it to the endocrinologist office, because I said that one thing?
Scott Benner 1:18:40
Oh, it's that thing to me. It's the same thing. It is the same
Nicole 1:18:43
exact, it's like a religion or it's a it's a conspiracy. I don't know what it is. But yeah,
Scott Benner 1:18:49
I don't want to listen, I'm not gonna bore you. But I've Yeah, I don't know where else to say this. Because if I start talking about it on a regular episode, I'll go on for two hours. But I have the very quick story is that I just began keeping chameleons a few months ago. And I random Yes, it is. And I didn't know anything about it. And it was kind of dropped in my lap as a gift. They're very difficult to do. And there's a lot of technical stuff that you need to know to accomplish it. And the information you get from pet stores is not accurate or good. Sound familiar? Sound like diabetes do a little bit right. And so I had to go off into the world and find a person who was having a lot of success, and figure out how to mimic their success. Sound familiar, Nicole? Right. And then I did all that had my success. And then I started paying attention to the person as a content creator. And every once in a while just like I did today, you get overwhelmed with the mountain of that you have to overcome to tell somebody about how to well hydrate their chameleon or to how to Pre-Bolus for their meal. And you start seeing them as a person who's trying to get through the roadblocks that Apple puts up the road boxset Instagram puts up that Facebook puts up that all these things happened to get you this information. And I looked one day and I went holy, this guy named Bill is me. Mm hmm.
Unknown Speaker 1:20:11
He Scott,
Nicole 1:20:13
chameleon, chameleon world.
Scott Benner 1:20:15
And I'm Bill of diabetes. And he and I are having the same exact thing life. Mm hmm. And the same, the same problems, the same interactions with good people and with people who are a little nutty, and with people who are defending their ego and with people who are defending their opinions and their perspective, and I'm like, Oh, my God, it's the exact same thing. And then I was like, everything's the same.
Nicole 1:20:40
It is. Yeah, that's funny. Yeah, it is.
Scott Benner 1:20:44
Everything just breaks down into these small subsections of how people react, and then how they react inside of the ecosystem, and how the ecosystem can handle it or can't handle it and how the person at the center of it is put in charge of trying to keep it all from spinning off its axis. And I'm Bill and Bill is me. I am Bill and Bill. i There's a Beatle song in there somewhere. Anyway, fascinating. And I've spent the last couple of months not only learning incredibly well from a man named Bill strand, how to manage chameleons. But I got a mirror held up to me. And I was like, Oh my God, that guy's existence is my existence.
Nicole 1:21:26
Yeah. I wonder what the online chameleon world is like? It's
Scott Benner 1:21:30
exactly like the diabetes. It's exactly the same. I wonder
Nicole 1:21:34
what the conspiracies are there. Oh, yeah. Oh, interesting. Here's
Scott Benner 1:21:38
one for you. Here's a major argument in the chameleon world, right? How you hydrate your chameleon. So chameleons don't drink like you can you don't put a bowl of water out for them, for example. But if they're dehydrated enough, they will lick liquid off of like dew off of leaves and places like that. So there are people who like massively soak the cages so that they the chameleons Can, can drink? Well, a handful of or more years ago, and this is me talking a little out of school because I don't have the depth of history on this one the other people do. But people realize that if you use fog, to bring up the humidity in the cage overnight, that the chameleon breathes that in overnight, and then does have no need to drink. The caveat there is that if you don't dry out the the enclosure, then you could get mold and fungus and the communities could have problems on their feet from touching wet branches and everything. So there's a balance to have between the humidity, and then drying that humidity out over and over again. Right. And they argue about that. The same way people with diabetes argue about low carb. That's funny. It's insane. how similar it is. Oh my god. Anyway, oh my gosh, chameleons are very well hydrated. And I don't spray them incessantly with water to accomplish that. And I learned how to build my own fogger which I'd be happy to explain to you Nicole at another time.
Nicole 1:23:06
I'm going to be taking on the chameleon listing role. Can
Scott Benner 1:23:08
I tell you something about this Fogra that I've built also work as an amazing humidifier in your home.
Nicole 1:23:13
Oh, yeah,
Scott Benner 1:23:14
I can see that. I live in Texas. So maybe you do need my help. I don't know it can get pretty dang humid here. So I imagine the winter it's not but am I wrong? No. The winter
Nicole 1:23:24
isn't as humid for sure. But the summers can be pretty brutal. For sure.
Scott Benner 1:23:28
Cool. You've been really lovely to listen to my complaining and then to say nice things in between. So I'm so happy for you and your daughter and please get your thoughts on that and send me a note and I'll
Nicole 1:23:41
let you know message you if I hear anything from them, but appreciate it.
Scott Benner 1:23:45
I really do. I hold on second for me. Okay.
Jalen is an incredible example of what so many experienced living with diabetes. You show up for yourself and others every day, never letting diabetes to find you. And that is what the Medtronic champion community is all about. Each of us is strong and together, we're even stronger. To hear more stories from the Medtronic champion community where to share your own story, visit Medtronic diabetes.com/juicebox And look out online for the hashtag Medtronic champion. I want to thank the ever since CGM for sponsoring this episode of The Juicebox Podcast. Learn more about its implantable sensor, smart transmitter and terrific mobile application at ever sent cgm.com/juicebox Get the only implantable sensor for long term wear get ever since. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you're not already subscribed, or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that. Now. Seriously, just to hit follow or subscribe will really help the show. If you go a little We'll further an apple podcasts and set it up so that it downloads all new episodes. I'll be your best friend. And if you leave a five star review, oh, I'll probably send you a Christmas card. Would you like a Christmas card? I was looking for a way that we could all get nice and tan and meet each other and spend some time talking about diabetes. How are we going to do that? On a juice cruise? Juice cruise 2025 departs Galveston, Texas on Monday, June 23 2025. It's a five night trip through the Western Caribbean visiting of course Galveston, Costa Maya and Cozumel. I'm going to be there. Eric is going to be there. And we're working on some other special guests. Now, why do we need to be there? Because during the days at sea, we're going to be holding conferences. You can get involved in these talks around type one diabetes, and they're going to be Q and A's. Plenty of time for everyone to get to talk, ask their questions and get their questions answered. So if you're looking for a nice adult or family vacation, you want to meet your favorite podcast host but you can't figure out where Jason Bateman lives so you'll settle for me. If you want to talk about diabetes, or you know what, maybe you want to meet some people living with type one, or just get a tan with a bunch of cool people. You can do that on juice cruise 2025 spaces limited. Head now to juicebox podcast.com and click on that banner. You can find out all about the different cabins that are available to you. and register today. Links in the shownotes links at juicebox podcast.com. I hope to see you onboard. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com
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