#1263 DKA In Our Town Part 2
Scott Benner
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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