#764 Make It Happen

OmnipodJuicebox PodcastInterviewType 1 Diabetes

Oct 4

Irene is the mother of a child with type 1 diabetes.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to episode 764 of the Juicebox Podcast

What's up everybody today on the podcast I'm going to be speaking with Irene. She's the mother of a child with type one diabetes. I think she's got like 1000 kids or something like so many kids. And she's also a registered nurse. A looked back at the notes that she sent me before we recorded and I gotta be honest with you, I don't know if this is the stuff we talked about it or not. All I know for certain is that I had a good time talking to Irene. And that is always, always a good sign for the episode. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you are a US resident, and you want to help people with type one diabetes, you can do that right now. While you're sitting on your butt, go to T one D exchange.org. Forward slash juicebox. Join the registry, fill out the survey completely fill it out completely. And you've done just that. It only takes a few minutes. And it's completely easy to do. This show is sponsored today by the glucagon that my daughter carries G voc hypo Penne. Find out more at G voc glucagon.com. Forward slash Juicebox. Podcast is also sponsored today by touched by type one head to touch by type one.org or find them on Instagram or Facebook. What am I saying? Or do all three, go to touch by type one.org Find them on Facebook and find them on Instagram and then follow them and see what they're up to.

Irene 2:05
My name is Irene. I am a mother of six. My fourth child who is my oldest son is our t one D and I'm also a registered nurse.

Scott Benner 2:18
Okay, now you listen to this podcast.

Irene 2:21
I do I found the podcast. Let's uh he was diagnosed late December 2019. And I found the podcast probably like two to three weeks later and started listening to it on my drive to and from work.

Scott Benner 2:40
So the reason I asked is because when you told me you had six kids in your mind, were you like, he's gonna ask Oh, he's gonna have a field day. I just I don't even first of all, did you find some of them? Are they rented? Did you adopt them? Like are they all came? I don't want to be delicate, but that they all come through your birthday. They all come out of

Unknown Speaker 2:58
my business. So five out of the six did.

Irene 3:05
My oldest daughter is 20 years old. She is my biological child from my irresponsible college days.

Scott Benner 3:18
She know that I guess she does now but

Unknown Speaker 3:21
no, she knows it. We're very, like open discussion.

Scott Benner 3:25
So we're gonna call I have one through six listed in front of me. So I'm just gonna call number one kegger and then number she's only 20

Unknown Speaker 3:38
DC party clubs. Yeah, she's she's 20 years old.

Scott Benner 3:43
How old? Are they in order 20 than what?

Irene 3:46
14 Okay, um, and she is not biologically mine. She's biologically my husband's from a previous relationship that he had. And we married almost 13 years ago. And then we have four children together. And so then there's a 10 year old girl and a seven year old boy. And that's James. He's our kiddo with type one. And then the next boy is about to turn six and three

Unknown Speaker 4:23
weeks. Okay.

Irene 4:25
And he has some other health issues that were diagnosed right around when James was diagnosed. So we just had our our whole world turned upside down. And then there is the baby who is not really a baby anymore. He's two and a half. And at the time that both of his older brothers were being diagnosed, he was about two and a half three months.

Scott Benner 4:49
Yes, all this happened around three years ago. Is that right?

Irene 4:52
Yeah, we're like right around like the two and a half year mark from our diagnosis.

Scott Benner 4:59
Okay. I think I understand. And when at what point in this story did your vagina fall off? Was it as recently?

Unknown Speaker 5:09
So it was after the sixth baby. And I actually had of like, actually did have complications and for you. And we don't live in Utah. We're not. We're not practicing Roman

Scott Benner 5:30
Catholics. Did you hear? Did you hear it hit the Florida they get caught in your pant leg or what happened? Exactly. That's terrible. I'm sorry. That's so

Irene 5:37
you're fine. You're fine. No, but it's funny because the baby was born in September. And I was four days post surgery, like gyn surgery. When I was sitting on the couch with my husband one night, as James, who was never much of an eater told us that he had finished his dinner, finished his brother's dinner, he was still hungry and mid sentence ran for the bathroom again, and I was like, Oh, my God, he has diabetes.

Scott Benner 6:06
You're a nurse. And you knew.

Irene 6:08
And I was like, and we had just been talking about we had noticed the frequent urination for several weeks. But he had kind of had like other he just started kindergarten. He had had kind of other like, I don't like the bathroom at school. And I was like, Oh, he holds it all day. And then he's got to come home and go to the bathroom. And when he was falling asleep on the kitchen floor, I was like, oh, full day kindergarten is such a big transition. And there's a new baby. And there's our other son had just been diagnosed with all these neurological conditions. And we were doing all this PT and OT and speech and so I like every other parent, right? I had all these other explanations. And then we we just, you know, kind of slow down. We were on Christmas break. And we did we had this night where I was like, this is not kindergarten transition. His pants are falling off of him. He can't like finish putting his hot wheel tracks together without running to the bathroom. Our oldest daughter had made a comment, like, do you know he ate a whole box of NutriGrain bars today? And we just started talking about like, how often he was refilling his water bottle.

My husband was like, hey, you know, he started wetting the bed. I worked night shifts. My husband was like, a couple times. He's like, wet the bed in the middle. And it was a Saturday night. I was like, We cannot wait till Monday. We gotta go.

Scott Benner 7:36
When you people have sex? I don't even understand. I can't I mean, the story is fascinating. But you work the night shift. I can't figure out the rest of it. Just I'm looking here. 2014 10 762 and a half. You're on the night shift. I don't know what's going on. You guys meet in the parking lot at a Denny's on your break. What do you do? I'll just tell me real quick. Is it as he's going to work? Just I just want to know what it happens. And then we'll get past that I promise.

Unknown Speaker 8:04
So, I worked overnight shifts over three or four nights a week, which means I am home Sunday this week, but my husband also works. He works split shifts. So he's out the door at 5am He's home by 930 for a portion of the day and then he's back out the door at one o'clock in the afternoon and by 430 you just figure it out.

Scott Benner 8:27
I'm gonna get a clock and a chart and a graph and I'm gonna figure out exactly when all these children were made I mean I'm so sorry because before we started recording we start before we started recording I made you put on the headphones that now I hate you're fine I'll get rid of I'm sorry that you have to let him switch back over Are you there? Hello.

Irene 8:52
Did that work?

Scott Benner 8:53
Yeah, you're there just took us the switch back to the computer. That's all it they were great. Except as you spoke it was weird as you spoke in longer sentences. Your voice faded away. Oh, interesting. So I was like, damn, and Alright, how old are you?

Irene 9:11
I'm 40

Scott Benner 9:12
Wow, it's a lot I live in Iran. Do you feel tired? Are you tired all the time?

Irene 9:20
Sometimes I am really tired. How do

Scott Benner 9:23
you manage so my this is interesting. So your oldest obviously isn't in need constantly of thanks is probably college age, right?

Irene 9:33
Yes, she is. She's a she's in her second year of college but she actually has junior standing because she's she's a real go getter and took like every AP course she could and high school so she entered her first year of college. Actually. She was a sophomore by the end of her first semester

Scott Benner 9:55
when you drop off your baby to college that you made in college is the last thing you data, we're pleased for the love of God. Did I come on?

Irene 10:05
Um, so she spent her first year of college fortunately, virtual and her grandparents. Okay. COVID. And then yeah, when we took her in the fall, I was like, you have to remember, like, sometimes we make bad decisions when we're not really an adult. And then we have to decide how to take responsibility for those

Scott Benner 10:28
that one day we have to drive it to college. So please be careful.

Irene 10:35
Exactly. Exactly. She did not love campus life. So she spent a semester on a campus in Pennsylvania, and then was like, Yeah, I just I want to come home. i This isn't for me. So she's, she's actually back home and going to a great university that is local to us. Good.

Scott Benner 10:57
And that explains why you and I are getting along so well. Right? We grew up in the same place. Yeah, there are people listening right now that are horrified that we're making fun of your child like this. And no, they don't understand you should live here. It's all fine.

Irene 11:13
Right? It's it's always been an open conversation. I mean, like age appropriate, but it's always been an open conversation. Because how do you how do you not give your children the truth? Like, my husband is adopted, it's a closed adoption, but his parents have always been open with him about it. Like it was never this big, shocking revelation for him.

Scott Benner 11:38
Well, being serious. If you were uptight about it, I would take that as an indication that you hadn't dealt with it. Well, like that you're so loose about it. I don't take anything that you have said seriously, about, you know, in the last 10 minutes, I mean, your if you are serious about any of the things that we've said about your oldest, you're a psychopath. So I don't believe you are and I hope people understand we're joking, but nevertheless, okay, so are there any other autoimmune issues in the family?

Irene 12:08
So I have one cousin on my dad's side who has Graves disease, that's the only autoimmune one that I know of. Okay. Um, and then other than that, like, there's a lot of asthma and allergy, which isn't, like truly thought of as autoimmune but it does have the whole inflammation kind of component to it.

Scott Benner 12:38
Yeah. Okay. And then in your regular, I'm sorry, in your family proper. You said, James, younger brother has something but it's not. It's not autoimmune.

Irene 12:49
It's not autoimmune. He has something called Perry ventricular leuco. Malaysia.

Scott Benner 12:54
Why does he have that? Like the test your spelling skills? Wait, go ahead. Try it again. perio.

Unknown Speaker 13:01
Peri, Peri. Ventricular.

Scott Benner 13:05
tricular. I think this is heart related. Go ahead. No,

Irene 13:09
leukomalacia. It's brain related. It's abbreviated P V. l just Google PVL.

Scott Benner 13:17
I found it. I found it. I I didn't spell any of the words. Right. And I still can't I still found it. Wow. Characterized by death or damage of softening of white matter in the inner part of the brain. How does this how do you learn about this?

Irene 13:34
So um, so as a baby, he had developmental delays. And, you know, we just noticed that he's our he was our fifth child, we just noticed that he wasn't doing things as soon as his siblings had. And he was just kind of behind in his milestones in general. And initially, when he was really little, and we approached it with our pediatrician, and they're like, Oh, he's the fifth kid. Like, you guys are just so intuitive and calm as parents, you're anticipating his needs, his siblings are anticipating give him time, give him time. And he wasn't catching up. And we reached a point a little bit after he turned one that I self referred to early intervention to start getting him assessed. And initially, they just refer to this is like global developmental delays. But we started speech therapy, we started occupational therapy. We really weren't getting anywhere. So I kept pushing this was like, something's not right. Something's not right. We got on multiple waiting lists to have him more formally evaluated by a developmental pediatrician or neural neurologist. And unlike type one diabetes, it's not life threatening. So you sit on weightless us for months, sometimes years and we were on a waitlist with the developmental pediatrician that's associated with the hospital I work at we were on a waitlist with Children's National we were on a waitlist in Baltimore with Kennedy Krieger. We were on a waitlist with UVA, and we got off the UVA waitlist first. So we went down to UVA, and he was assessed and they actually diagnosed him with mild cerebral palsy with something called hypotonia, which is where his muscles are, like loose or weak, and he just doesn't have stamina in his muscles. And they did bloodwork and they did an MRI, and the MRI is how they diagnose the periventricular leukomalacia, they actually could see a brain injury that had been caused at some point by a lack of oxygen. And then that injury caused the periventricular leukomalacia

Scott Benner 16:05
that leads to the cerebral palsy

Irene 16:07
that leads to the cerebral palsy and leads to the hypotonia and the learning disabilities and ADHD, and all the things that come with it. Wow.

Scott Benner 16:17
Well, that's a lot, and Jesus, and that's happening as your son's being diagnosed with type one as well.

Irene 16:24
Right, so baby was born early, because I was having pregnancy complications baby was born mid September. And then with a two week old infant, I drove the hour and a half down with my infant with my, at that time, three year old child down to UVA to do this assessment. And then we were given all these diagnoses with the CPE and the hypotonia. And, and told, you know, he needs an MRI, he needs all this bloodwork, you need to see a genetics team. So we went home, we came back in November, we did a ton of bloodwork saw genetics, we went home, we went back in December to have the MRI because it had to be done under sedation with an anesthesiologist. And, and then they called us two days later to give us the results of the MRI. And it was devastating, but at the same time it open doors because prior to that our insurance company wouldn't cover any speech or OT or PT or anything. Because his diagnosis like didn't meet their inclusion criteria. So once we had this diagnosis, it opened up doors for getting him more care and support.

Scott Benner 17:48
Is it a progressive issue? Or does it

Irene 17:51
not progressive, thank God, so it won't get worse. His speech was actually with really intense speech therapy has improved. He's really He's in kindergarten this year, he's really flourished in kindergarten. And then through occupational therapy. He's uses utensils now which he like before. And I mean, like a year and a half of occupational therapy, like he couldn't eat soup. Or if you wanted ice cream, like he would literally eat it with his hands because holding a spoon was too difficult. He didn't really start dressing himself till this past summer like so how many five year olds don't dress themselves like it was those type of things and now he can get himself dressed and undressed, like potty training was really late. So he's he is flourishing, he's making tons of gains. It just takes him so much longer to get there and to do things.

Scott Benner 18:54
Wow. Oh, my gosh, okay. Um, I was looking more about it. And this just seems like it's such a random thing, right? Like the ways it can and

Irene 19:05
yeah, it's random. And nobody was looking at him for this because it most typically happens in premature babies. And he was not a premature baby. Like prematurity is one of the highest risk factors. And he was a full term 10 pound baby. Like, you know, nobody was like, oh. And it was so frustrating at the time because as I'm sure you see, like, the like you can have mild to severe and what type of interventions you need can be vague and some kids like develop a seizure order disorder. Some kids don't. Some kids have the cerebral palsy, some kids don't. And so you don't know what you're really dealing with. You just know Have to get into it and deal with it day to day and kind of see what their lives look like and what happens.

Scott Benner 20:06
Okay, wow. I appreciate you sharing that with me. Geez, I feel better. I'm making fun of your vagina earlier.

Irene 20:12
No, you're like, you know, I've had someone offer like, looks at my shopping cart at Costco. And they're like, What do you do? Like run a daycare? And I'm like, Nope, this is just for my kids. And I'm like, do you need me to buy you a television? Do you need a new hobby?

Scott Benner 20:30
I will take anything. Thank you. Would you like to babysit? I don't know you. But if you just take two of these kids and tuck them, that'd be amazing. Okay, so now how do you so we know how you saw the type one? Once you recognize that? Do you take them right to the hospital, you go to a doctor, which which did you know

Irene 20:48
it was a Saturday night. Two of our daughters were at sleepovers. You know, the youngest two boys were already in bed. So I explained to James, I was like, we have to go to the doctor tonight. I didn't tell him that I thought he had diabetes because he has no frame of reference for what diabetes is and and there was a part of me that was hoping that we were going to get there and I was going to embarrass myself and they were going to be like, Oh, silly mom like diabetes. You're such a worrywart. He's got a urinary tract infection or something. So I explained it to my husband. But I did pack up my breast pump and I packed clean underwear for James and myself. And I was like I were getting admitted, I know what's going on here. And we we left our the hospital that's closest to us, I wouldn't take my worst enemy there. So we got on the highway, we were we were just about to get on the highway when he had to stop and go to the bathroom again. So we stopped at a gas station like right before you get on the interstate and begged this lady to let us use their bathroom. And that's when I decided I worked at a hospital that is a level one trauma center that has a pediatrics program. But we passed to other hospitals on the way there and I I just was like I don't know, if he's in DKA. I don't know how bad his blood sugar's are. So we went to a smaller hospital that is affiliated with the hospital I work for and that I knew there are five hospitals in that health care system that if we went there, and I was right, he would be a priority for placement into our pediatric unit. And that they I also knew that that emergency room had board certified pediatricians. So I felt comfortable going there. So we went there, and we walked up to the like checking desk, and I just still couldn't quite bring myself to say it. And so I've looked at this like registrar, this non medical person and, and I was like yeah, my son is like urinating a lot. And I think he needs to see a doctor. And the nurse looked up. And she was like, come on back here. And I you know, she said, Well, what's going on? And I said, I think I think he has diabetes. And she was like, Well, why do you think that so I explained everything. And she grabbed one of their technicians to get an Accu check before doing anything and the meter just read Hi. And it's the one time and that like first space of time that I cried I just started to cry. And the nurse just focused in on James and got his weight and his vital signs. And then she pulled out her insulin pump and showed it to him. And she said to him guess what I have diabetes to.

Scott Benner 24:22
G voc hypo pan has no visible needle and is a premixed auto injector of glucagon for treatment of very low blood sugar in adults and kids with diabetes ages two and above. Find out more go to Jeeva glucagon.com forward slash juicebox G voc shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G voc glucagon.com/risk. If you're looking for community and support around your diabetes, I'd like to suggest to you that you find the Juicebox Podcast private Facebook group, which now has near Really 30,000 members in it. That's a lot of people who can offer you support guidance, or just a shoulder to, you know, not cry on, we don't cry. But some support that you might need sometimes. It's called Juicebox. Podcast, type one diabetes. It's a private group. And all you need to do is answer a few questions to get in just to prove to the algorithm, you're a real person, and then you're on your way. So matter of fact, I'm talking to people in the group right now. This is what I said to them. Does anyone live near me and want to record ads for next week? I'm tired. And while we were chatting, I said, if anybody throws their name in here, I'll give them a shout out in the next episodes, ads, so very quickly, who we got. Looks like Kelly, Elizabeth. Blue. Phil. Kristen. Dana. Brandy. Yes, you made it brandy. There was a cut off. Cheyenne asked me to shout out her daughter but then didn't tell me her daughter's name. So if you're Cheyenne daughter, and you're hearing this right now, your mom screwed up. Hold it against her all day. Who else? John and Mary Beth. Isabel didn't ask to be shouted out, but it's happening anywhere. This person says I'm here for my shout out. Call me Professor Ellie. All right, Professor Ali. You're in Monica. Billie Joe. thinks they missed the window. They'll be excited to see the here's somebody from Brisbane is at Brisbane L. Did I say it right? Anyway, you should check out jump over. It's a great group of people that really lovely, seriously, you can't go wrong. It's absolutely free to be in. And you're gonna see a ton of support there. Rebecca, Roxanne, Heather, Mike, Hannah, Scott, Danny, and Vera. Thank you for listening to the podcast, and for being a part of the group on Facebook. Links in the show notes, links at juicebox podcast.com. To the sponsors, head to the Facebook page. Let's get back to Irene.

Irene 27:09
Guess what, I have diabetes too. And I was right about your age when I was diagnosed. And she was like, Look at this cool thing. It's like having a computer in my pocket.

Unknown Speaker 27:23
And it was just

Irene 27:25
it was amazing to have someone right there who like understood and could say something to him that was so reassuring and wasn't frightening.

Scott Benner 27:38
I mean, I have to tell you I hear a lot of these stories and made me upset telling yours so I sometimes I fly right through them and I'm always surprised what's going to make me upset. This time it was the nurse having diabetes I was like that's a plot twist right out of like a like a movie. And now Now I'm upset Hold on a second. Well, I held off crying until they took the baby back I felt like I was I was really doing something back then. I I remember getting put into a little like waiting room and to call her room was generous. It was basically the closet is a closet with two chairs in it and an old magazine. And I remember crying in that that hole and then falling asleep and then being woken up in the morning. And you know Arden's like, like literally had it felt like she had tubes coming out of everywhere. And wires and everything. Yeah. Well, okay, so geez, I'm talking. I'm supposed to be better at this. I read. No, he's sorry. Oh, you're fine. Fine. Except I can't find my next question. Because I'm suddenly sitting in a hospital in Virginia, my kids two years old, and I can't break away from it for some reason. I but I guess what I want to understand is that being a nurse, and and, and the mother of a newborn child and someone who's seeing something with another child, like when you find a quiet space after that, how do you prioritize things?

Irene 29:14
So, you know, I think this speaks to, like, I have kind of that like, stoic like compartmentalize. So, you know, we get him back into the ER, they started on IV, they draw his labs, they get IV fluids going and I'm realizing now my mistake and coming to this hospital and not driving another 25 minutes down the highway because now he's gonna have to be transported. And I am not gonna let him be separated from me. So I just went into problem solving mode and I like called my husband and I was like, He's got it. He's got Diabetes there. They're starting everything there. They're calling our hospital to get him a bed and we gotta wait for his labs to figure out does he go to the pediatric ICU? Or can he go to the floor? And does he need the insulin drip and I'm like, Oh, my God, my car's here. And we can't leave our car here. But I'm not putting him in an ambulance and driving without him, he'll be terrified. So fortunately, we have family that's local. And I'm like calling that family. And a nurse that actually used to work in the pediatric ICU at my hospital pops her head and and she was like, Oh, my God, I thought it was you. And she like wraps her arms around me. And she was like, we got you. And she took over James, she basically, like kicked out the nurse that had been assigned to him. And I was like, Nope, he's my patient, like, I'm taking him. So I just went into this, like problem solving mode of thank God, she was willing to hold my keys until a family member of mine, like showed up there that night to retrieve my car so that I could go with James and the medics. To the hospital, and we didn't have to be separated. And I just was so laser focused on what do we need to do for James, how do we deal with logistics of this? How do we tell our older daughters? How do I keep feeding the baby, even though I'm physically separated, that there wasn't that moment until we were home. And we spent two nights in the hospital, and my husband and I kind of traded back and forth. And, and the moment of like realizing like, I remember the endocrinologist coming in the next morning and being like, you're a nurse. So you get this and I was like, stop. i You're right, I'm a nurse. My entire background is adult critical care, and wound care. I'm not a pediatric nurse. I am not I've never worked in an endocrinology practice. And the diabetics I see are either in the ICU in crisis, and I can, I can manage the business out of your DKA I can titrate, your insulin drip, I can correct your electrolytes and then send you to the medical floor for them to finish getting you stable and get you discharged. And I can help you when you've gotten to the point that you have wounds, or that you're recovering from an amputation because for whatever your barriers were, your agencies were high, your blood sugar's were high and you have complications. I don't know the day to day in between. And I remember saying to this endocrinologist, I want you to talk to me like I'm stupid. Because I have to do right by him. And all I can see in my head is the complications and all the adult patients I've taken care of who have been type one or type two, who haven't gotten what they needed. And now in their adulthood, they're facing all these complications. I was like, you have to talk to me like I'm stupid, because that is the weight that I feel is like, literally looking at this five year olds feet going, I have to protect his feet and looking at him and being like, Oh my Oh, my God, I have to do everything right for him so that he never winds up on dialysis. Yeah,

Scott Benner 33:46
your whole perspective is from that. That eras? Yeah. And yes. Well, that's really wonderful that you that you had the wherewithal in the moment to be like, no, no, I don't understand any of this. Just like you started step one, and let's go the part I understand. It's not fun. So no, it's not. It's not either fun parts that you can tell me about. There aren't by the way, but you know, at least basics, right. And

Irene 34:11
well, and I have to say, our hospital and our endocrinology team, like, they talk to us about Pre-Bolus thing in the hospital, and we had conversations about like, ideally, you're gonna give him his insulin. And then 15 minutes later, he'll eat. If you're having problems with knowing how much he's going to eat or how much he's not going to eat, then, you know, we're going to give him half of his insulin. We're going to wait 10 to 15 minutes, he's going to eat and then 20 minutes after he's eaten, you're going to carb account and figure out what insulin he's missing and give it to him again, to make up for the carbs that aren't covered. So I feel like we got really, in that sense, better education than a lot of other people did. Okay, and I got all the initial education. And when they were like, Okay, you guys are great to go home because he was not in DKA. I was like, oh, no, no, you're not sending us home. Tomorrow, you're going to do all this education again with my husband, because I can teach him but what if he has different questions that I didn't think to ask? And I don't know the answer. And I was like, he needs his opportunity, as like, because he is going to have to feel comfortable and safe. Because I leave it six o'clock at night, and I don't get back until eight o'clock in the morning. And I got to know that they're okay. Right.

Scott Benner 35:41
You talked earlier about how you guys split up the time in the hospital, and it's been stuck in my head since then. It's one of my least favorite things about parenting. Is that when you have multiple children, at some so hard, yeah, at some point, someone misses something. Yeah.

Irene 35:57
And, and I just, I was insistent, I was like, you can't, you can't discharge James tonight, solely because my husband has to have the same opportunity that I had, right. And we've always approached parenthood as a team, like it's not 5050. But it's, it's a team. And there's nothing that

Scott Benner 36:21
we you didn't you didn't do you didn't have to make the decision that only one of you gets the information. Like, we have some coming up in, in a number of months, where it's obviously not a health issue, but my son is going to graduate from college on the same weekend as Arden senior prom, oh, condemned his college is not near our home. Right? So we are literally trying to figure out how to like, see Arden off to the prom, and then get into a car and make a long drive. And then pull our selves together and get up in the morning and go to like Kohl's graduate. Yeah. Yeah. It's just it's, you know, there's that one moment in the middle where you're talking about at first and you go, we're not going to split up, right? Like, you're not going to stay with her for her prom. And I'm like, we can't do that. And we can't skip one of those things. And tell either of them. Hey, I'm sorry. We can't see you at your prom because Cole's graduating because that makes sense, right? Like if you had to make the decision that does make sense in my head, like graduating from college, but won't make sense to her. And know, and vice versa. So it's a difficult thing as a parent to do it.

Irene 37:31
It's like when we when we gave James we gave him an old iPhone that is not on a like cell plan. Like it's an older iPhone that we're just connecting to the Wi Fi for as Dexcom. Right. And our our second oldest daughter was like, livid. She was like he gets an iPhone before I do. I was like, he gets diabetes. Like, like she and I. And she was she was like 1112 years old. How does an 1112 year old understand like, he gets finger sticks, he gets injections, he gets all this stuff like, and it's not like he's on tick tock or something like he's carrying

Scott Benner 38:15
in a fire. In a 504 meeting once I had a teacher say, How am I supposed to explain to the other kids that she has a cell phone and they can't have one? I said tell them if they want to get diabetes, they can have a cell phone. Otherwise, they should probably shut Oh,

Irene 38:30
I literally said to her, I said well, if you would like for me to start checking your blood sugar six times a day, and where Dexcom and I'll give you saline injection. And she was like, well, that means I can have a phone. That is the most insane thing you've ever said. We're not actually going to do that.

Scott Benner 38:52
I don't even know how you would afford to buy six people a phone. I mean, there's a world like if these two kids say the first two are near dwells there's a world where one day you might be buying eight cell phones a month. You're gonna need a job just for that.

Irene 39:07
It's hand me downs it's hand me down Scott.

Scott Benner 39:11
I even just mean like the service for them. I know. Well, you might have to incorporate

Irene 39:17
my husband has this old school will never give it up this old school plan that he got when he was in college with with a cell phone carrier and we will never give this plan up. Because you can have you pay your base and then you can add up unlimited lines for $5 and one $5. Wow. That's how old this plan is.

Scott Benner 39:39
You guys still paying for minutes? No, it was it was

Irene 39:43
like when they first started rolling out like the unlimited. It's, it's insane. Like and every once in a while when we wind up having contact with the company. They're like, Oh, we should look at your plan and then they look at it and they're like, ah, nobody has this plan anymore. You should never change your And we're like, we know.

Scott Benner 40:01
We're not changing. This is the only thing. Can I tell you something? Kid? This is the only thing working out for us Have you considered having any other kids tested for antibodies for type one?

Irene 40:16
So three of ours have done TrialNet?

Scott Benner 40:18
Yes. So well, okay.

Irene 40:22
Two of the girls have done trial nap, my oldest has opted not to and she was old enough that I completely let it be her decision. But the next two girls, I bribed them with chocolate to let me do trial net, because we were able to do that at home. fingerprick. Yeah. Um, so yeah, I bribed them with multiple chocolate bars. Yeah. And then our middle son, our son who has the neurological concerns, we just did it with him this past fall, and he had a Pokeyman toy that he wanted. And we ordered the Pokeyman toy and waited till it arrived. And then like, you know, we're like, here's the toy. Here's the kid, like, we get this to build. And then we'll then you get the toy. And then our youngest is just he turns two and a half in a couple of weeks. And you have to be two and a half to do it. So we will probably do it at some point and the next year,

Scott Benner 41:42
did you get results back? Or was this very

Irene 41:44
we did. So none of our three that have tested have any antibodies? Wow. That's yeah, that's goodness. And for me, it's been a peace of mind, like when I see like, so my middle son, like recently was definitely having a growth spurt and the increase like I want something to drink, I want something to eat. I was able to be like, he didn't have antibodies. He's five years old, almost six, this is an appropriate time for a growth spurt. He's fine. It's okay. And it's, it's given me a little bit of reassurance. And I think if any of our kids did have antibodies, for me, it would have been like that opportunity to talk with our pediatrician about what's our plan for monitoring so that we catch this beat for we have to be admitted to the hospital before we have blood sugar's in the seven hundreds. And that we can avoid that.

Scott Benner 42:50
I'm going to ask you about your management style. Because if you and your husband are not in the house at the same time, so let's set up some parameters first, like Sure, kid, your kid, your kid, James has had diabetes for two and a half years. How sounds like he's using a CGM? Yes, a pump?

Irene 43:11
Yeah, he's on the Omnipod dash. So we got home from the hospital, we had that JDRF bag of hope. And I was like rifling through that backpack. And I found a leaflet for Dex calm. And I was like, what, what is this? Like? I want to know about this. Because we were definitely finger sticking more than like, in the hospitals called AC and H s before meals and at bedtime was and then that like 2am Check that we're all told to do newly diagnosed Well, we were definitely doing more than that. And I was blowing up our endo with like, I'm following what you told me I'm carb counting I'm giving correction and his blood sugars are still 250 300 This is not okay. Like we have to do something better than this. So I just called Dexcom directly that he was in. It was like the Tuesday after he was diagnosed, right? He was diagnosed like late on a Saturday. It was like Tuesday morning. I'm on the phone with Dexcom. And I'm like, This is my insurance. This is my kid. This is my Endo. Like I want this, how do I get it? And I spoke to a Dexcom representative who was like let me start researching your insurance. Let me reach out to your endo and get the scripts they were like this is not a problem. We'll get this figured out whether it's going to be DME or pharmacy. I hung up the phone with them called my insurance company and I was like you better approve this.

Scott Benner 44:49
calls you I don't have your arguments. Yeah.

Irene 44:52
I was like, you know, what's the criteria? Do I need a prior approval? Because I'm gonna hang up the phone with you And then I'm gonna call my endo and our insurance was like, Yeah, not a problem. It's under your pharmacy benefit. They were like, you know, typically you need to have had hypoglycemic events. And I was like, He's five, he doesn't even know. He can't tell he's unaware. So I was able to then call my endo and and be like, You need to tell my insurance company that my child is hypoglycemic unaware. And they were like, Yeah, well, most five year olds are and I was like, great. So I need I need that script.

Scott Benner 45:31
Did they hear you winking through the phone? Do you think?

Unknown Speaker 45:33
Yeah, pretty much.

Irene 45:36
And we picked up our Dexcom at the

Scott Benner 45:38
CVS two days later, wow, you made that, that's for sure. And I

Irene 45:43
just got on YouTube. And I found a ton of videos of people putting them on. And I showed a couple of videos, my husband and I sought out videos specifically that were young children putting on a Dexcom. And so we showed James a couple of videos, and we were like, alright, buddy, let's do it. And we put a Dexcom on. And the very next day, we had our first appointment with one of the CDs at the endos office. And we went in and she started like talking about all the foods that we should avoid. And I was like, Nope, we're not doing that. And I was like, I want to talk about a pump. And she was like, oh, no, no, no, you can't have a pump until he's been diagnosed for a year. And I was like, I'm gonna stop you right there. I'm an ICU nurse. I'm familiar. I was like I can fingerstick all day long. I know how to give injections. I understand sliding scale. I understand correction. I was like, I also understand the importance of tight glycemic control to prevent complications. I was like, I'm very familiar with insulin drip. She was like, well, insulin drips or regular insulin. And he's on Lantus and human log. And I was like, it's still the principle of the matter that with a pump, I can have better control. We can turn things off, turn things on, we can make adjustments as needed. I was like, I'm gonna get that pump. And she was like, well, let's talk about this thing. And she pulled out a Dexcom. And I was like, yeah, it's on his butt already.

Scott Benner 47:13
We got that lady.

Irene 47:15
Like, we've had it for 48 hours. Here's the receiver, as like, we're done with that we're moving on. And she just was like, well, that your doctor will never sign off on the pump. And I was like, Okay, we'll see about that. So we left that appointment.

had an appointment A week later, with a nutritionist, we went over carb counting again. And, and again, I looked at the nutritionist, and I was like, How do I get the pump. She was like, Oh, we don't usually do that for about a year. And then you have to go to this class. And then you have to meet with the trainers. And you have to do a sailing trial. It was this whole, like, lengthy, lengthy process. And I was like this, there's got to be a way around this, there has to be a way around this. And we met with our Endo, We made adjustments, we're getting better control. And then we met a different CDE. We were maybe like a month out, we met a different CDE and our endo group, who is a type one herself. And I was like I want him on a pump. What do I have to do to get them on a pump and she was like, I don't, I don't think there's any reason not to get them on a pump. She was like, you understand how to carb count, you understand how to finger stick, he's already on this. You know, on the decks calm. She was like, we just need to get you to the pump training class. And she's like, it's held once a month. And unfortunately, February's pump training class was actually yesterday and she was like, but we'll get you into the march pump training class. And at that point, I was actually already listening to the podcast and had met a mom at our elementary school who also had a type one daughter who was on the Omni pod and the Dexcom also and I had researched I wanted nothing to do with Medtronic. If we went with Medtronic, there would be a push to use their CGM and we were using the Dexcom already and comfortable with it. So I was like, Well, why would we change and then I was comparing the T slim and the Omni pod and I was like, the shortest tubing for this T Slim is 24 inches. And this kid is only 36 inches tall. I was like what do you do with 24 inches of tubing kid that's 36 inches tall like I was like we're gonna have to like wrap him in it. So I just that like really made me lean towards Omni pod. So beginning of March we went to pump train thing. And we had we had him with us and we had him like look at the T slim and look at the Omni pod. And he held the T slim in his hand and he was like, this is really heavy. And he was like, I don't like this. And he he was interested in Omnipod also. And fortunately, I had learned from this mom who was at our elementary school using the same endo that we use that we needed to go back to our endo and say, We want to train directly with the Omni pod wrap. And that the process would move a lot faster. Because the process through our like Windows Office and through our hospital would take us a month to two months to do.

Scott Benner 50:55
Oh, but um, but the the Omni pod rep might have a shorter schedule.

Irene 50:59
Yeah. Much longer schedules. So the again like the very next day, I was like, okay, my husband and myself and my child were all in agreement that it's Omni pod. I went to Omni pods website, I filled out their like intake form. We had met the rap I she'd given me her cell phone number I like texter and I was like Mona we're, we're settled. We want the Omni pod like, I filled everything out on your website, can you please help us expedite as quickly as possible? We called our Endo, we were like we're sold, this is what we want. We want to go with the rap. And we want to skip the saline trial, we want to go right to insulin. And again, it was that CD II that was a type one herself. That was like not a problem. She was like I think you guys are a great candidate to go straight to insulin. Like we'll get all the orders put in today.

Scott Benner 51:56
Do you think they thought that because you're a nurse? Or because of how assertive you were? And because

Irene 52:01
I'm a pain in the ass?

Scott Benner 52:03
No, hold on. Do you think she even believed that? Or did she just want to get rid of you? She's like, you know what? Yeah, sure, go ahead.

Irene 52:10
So I think it was a little bit of both, I think it was you are a parent who is knowledgeable, who's done her research, who's diligent for her child. And so we feel comfortable? And did some of that maybe come out of being a nurse. Yeah, maybe a little bit. But it's some of it that I'm just a

Scott Benner 52:35
person

Irene 52:36
a like, persistent. You know, when I know what I want, it's what I want. And I go after it.

Scott Benner 52:42
It's been clear through this whole story that you just made everything happen that you want it to happen. Like, you know, yeah,

Irene 52:50
I mean, I just, it's, it's funny, because I can't do it for myself, but I can do it for my kids. Like, if it's me personally, like, I'll back down, I'll be like, Oh, I don't want to bother that person. Really, when it comes to my kids, like, whether it's, you know, getting them accommodations for their IEP s or their five oh fours or getting them the medical care they need or, you know, any of those pieces, like do not get in my way.

Scott Benner 53:21
Well, you remind me of me, because, you know, we just recently had to switch back to edge park for Dexcom supplies. And, you know, they, they they act like recall, it's all set up, it's going to happen automatically, except in the year ends and they act like you've never bought these things before from them. And then all of a sudden, you're looking in the drawer and the piles going down and down, down. I call them up and I'm like, What's going on, you know, where the where the Dexcom supplies? Oh, well, we need prior authorization from the doctor. And I said, Excuse me. I apologize. I said, I said you know your shirt, great. She's been using it for like, you know, a decade or more. But let's act like it's never happened like, well, this is insurance for the year. We'll take care of it. I go, okay. And then seven days later, I call back and I go where are the Dexcom supplies? And then i The person said the same thing to me. And I went oh, no, no, no, no, stop. I was like, No, that's the same. Like you're literally speaking the same words that the last person said to me seven days ago. Yeah, you're never going to handle this. I'll take care of it. So I'm sorry, I'm dying. Give me a second. This is the end. One day I'm going to be right. What am I gonna say? And then you're just gonna hear like a loud thump on a table and people are gonna be like, Oh, she was right. It was the end.

Unknown Speaker 54:47
So fine art and on Instagram, let her know or dad's

Scott Benner 54:51
call 911. Sweetie, and by the way, don't look for art on Instagram. She doesn't like it when you do. No, no, no. She really, here's what happens. She goes Is this one of your people requesting my account?

Irene 55:05
I have I having teenage daughters, who also like I love sarcasm and have a sense of sarcasm. I can just imagine our being like, could you make these people leave me alone? Like, I don't get it?

Scott Benner 55:22
Why is this? Why are they bothering me? Did you hear her on the show? Last

Irene 55:26
year? I did. I did. I just laughed. I just I appreciated so much how there's this piece of her that is like, like, I don't know what the hell that is dad, like, that's your problem. Like, I don't need to know these things. Because because you take care of it for me. And my, like, my oldest daughter is cuz she's going to school locally and living at home has actually taken a job at the hospital I work at. And it's funny, because she'll be like, Yeah, you know, like, I met this person and, and she's like, they like really like you. And she's like, looking at me. Like, it's

Unknown Speaker 56:12
so weird that people like you.

Irene 56:17
Because my job my job now for the past several years is I'm not in ICUs anymore. i My job title is administrative director. It's like being for lack of a better way to describe it. It's like being the charge nurse for the whole hospital. And so it's a it's a visible position. It's 1000 bed hospital. And if somebody whatever the problem is a supply issue, a staffing issue, patient that has a concern. It's mine too deal with I go to all of the like emergencies, like a patient's having a change in status. Somebody has a respiratory or cardiac arrest like so it's a very visible session and so many

Scott Benner 57:05
people know you as fascinated by that. Because, yeah, you're just a child who had they got pregnant in college to her?

Unknown Speaker 57:16
Like, done a pretty decent job pulling your life?

Scott Benner 57:18
Yeah, no, no, by the way. I feel like that goes without saying, right. But no, I you know, please, it doesn't matter here like this, this podcast is listened to a little far and wide. And I go downstairs and say something and they look at me like I've never had a good idea in my entire life. And there's no reason why you would listen to me. And I'm not saying I'm right all the time. I like but you do sit there and you think, you know, a great many people at least pause and listen when I'm talking like they might not like they might not you might not listen to podcasts. They go wow, everything Scott just said was amazing. I'm gonna go put it into action. Like that. I understand. But like, I'm literally sometimes treated like a person who's broken into the house. Who's that? Why is he talking? Oh, my God. But by my point was gonna be is that i It's funny, we I coughed and we changed directions. But um, I basically told edgepark I'm like, I will do this. And it's it sucks. But I just went and did their job. I contacted the doctor's office, I contact the nurse practitioner, I made it clear what was going on. I made it clear what they needed to do next. Then I started following up with people like I'm the assistant to like, the most important person in the world. You know, I'm like, you know, Dr. diabetes says you need to do this. Did you do it? Do it now. You know, the next day back on the phone again? Is it done? And you'd be surprised how quickly it gets done when you're assertive like that. And I

Irene 58:52
wasn't I am not surprised. I completely because we we went to a pump class the first week of March 2020. Right. And we were scheduled to do our Omni pod training like, we were meeting the Omni pod rapid. I don't remember it was like a Starbucks or something. Like about three weeks later after class, and it was gonna be on a Monday, right? Well, the Friday before our training, the world shut down for COVID and we got this email that like the kids were gonna stay home from school for two weeks. Yada yada yada. My husband works for the school system. And you know, he got a notification not to report to work on Monday morning. And the first thing I did was call our pump trainer and be like, how does this impact our pump training on Monday?

Scott Benner 59:49
I don't care what's happening in the world. We're doing this pump training.

Irene 59:53
We have the pump train. She's like, I can't meet with you in person like I've I've got to go back to him. My leadership and figure out what we were doing. And I was like, Okay, I need you to call me Monday morning, obviously, I'll be home. Again, like, she was great. And she was like, we're trying to figure out, like, how to do it. And I was like, I have everything in hand. Like, I gotta tell you, if this takes too long, I'm just gonna read the manual, watch YouTube videos and do it on my own. And she was like, no, no, no, no, hold on, hold on. And she did get back with us. And we, we actually were Omni pots pilot for virtual training. And so we got on this virtual platform, not zoom. They were I don't remember. But they were using something else. And it was so funny, because you could see like other people who were watching this. And I had I gotten impatient. So by the time we got on it, I was like, Yeah, I've got the thing programmed, can you just like, look at it and make sure I programmed it correct.

Scott Benner 1:00:56
They're all like, kind of she figures this out with YouTube or a lot of a job. You know, I really want to tell you, I appreciate the way you are. I don't know if that's gonna make sense or not. But like, you're so your conversation with me today. Exactly mimics the way you post on the Facebook board. And so like you are that person, like you're not there's no error about you, like you're not pretending. And even what I mean about that is like your poster would appear to be to some people all over the place, I think of them as like, well balanced. Like some people pick a lane and stick to it, they yell about one certain thing, or they care about one certain thing, or they you have a you're involved in like a myriad of conversations that, that if if you What do I mean, if someone looked at just one of your posts, they could make it they could they could look and go, oh, this person is leaning in this direction with their ideas or that direction. But you're not you're very like, like, like, centered, but in a very good way. Like you're not. I don't know, like sometimes people say centrist with their ideas. And they think of it as poor, like, like, you don't have a real opinion one way or the other. But you're not like that you're everywhere

Unknown Speaker 1:02:13
I view it as you you have to look at the individual.

Irene 1:02:20
Right, there's, like, there's multiple ways to address things. end, you have to look at the individual and what is right for that individual. You know, and what meets their need.

Scott Benner 1:02:36
Yeah, so like a common sense person to me.

Irene 1:02:39
Yes, I think that's a good way to put it. Like, I just, you know, if someone else is really happy with, you know, low carb and, and MDI, and it's working for you, and you're having good outcomes, keep going, keep going. And I just might like, and support people where they're at, right? Because if you don't come in where they're at, they can't move forward. Like,

Scott Benner 1:03:17
you can't talk down to people or talk or be talking to them either. You have to You really do. It's such an it's I hate cliches, but you know, finding somebody's launch point. And beginning there with them. It's just, it's a big deal. Exactly. And I'm even talking about like, like just conversationally even, like, you'll, you know, there's a post here from you that I remember, like I looked, you know, I went through your thread, like this morning, like, oh, all of them like everything. I just kind of ripped her away. And it's just like, you go from like, complimenting a low carb person on a meal they put together which I don't think you keep low carb, right?

Irene 1:04:00
We don't I mean, we occasionally, I gotta be honest, we're not low carb. We're just not but like, in James's favorite breakfast is hot chocolate, and instant oatmeal. I mean, that oatmeal is 44 carbs and as hot chocolate as another 15 carbs. And I plug that in this PDM and it calculates, and then because I know it's what he needs, I throw another full unit of insulin on it and I put it on an extended Bolus. I've got other times where I look at a meal. And it's somebody has shared a low carb meal and I'm like, Hey, that looks good. I think I want to eat that. Yeah, I might make that.

Scott Benner 1:04:44
That's that to me. That's great. Like just, you know, that you just whatever seems to make sense at the moment as down to like, there's a post on here from you where you're just like, hey, does anybody think like episode 514 should be an after dark and then and you're just like joking around? Like, so you're, you're just a very, I don't know, I really don't know how to put it other than to say, you feel very common sense to me. And I think that that's what's helping you through, you know, all the things that you're seeing with your with some of your kids and and, you know in your schedule and your life like it all seems well, unless you're out of your mind and you're hiding it for this, would you talk to that now if you were just like Scott, I'm I'm probably Adderall right now. And I'm barely holding it together.

Irene 1:05:30
I probably am a little out of my mind. But no, I mean, I, you know, it's not that I don't look at the future. It's not that my husband and I don't have forward thinking. But we also are very much alike. take things as they are, and like, what does what does this moment need? What does this situation need? And we have other times where, you know, like, we tried a new spot for James's pot last night, we changed his pot. And he's, he's a lean, like, he's a lean little guy. There's no Pudge on him. We put his my husband put his pod on his thigh, and I I don't love this site. We had a lot of lows last night. I think it's actually that cannula might actually be like, pretty close to the muscle. And he's, it's like he's absorbing that insulin very quickly. And so we were up multiple times last night, and we Temp Basal back some and we were still having low. So he gets up this morning. He's just he's so tired. And he so cranky, and he doesn't want to go to school. He wants to go back to bed. And I'm like, Man, I don't want to every time be like, Oh, that's fine. Don't worry about it. Like where's the middle ground on this because I don't. I can see enough into the future. Like a teenage boy, if I'm always caving in elementary school and middle school in high school is going to be like, Oops, didn't write my paper. I better tell mom, I had a rough night so I can stay home. So he was low this morning. You know, he ate his breakfast. And then he had another 32 uncovered carbs. And I was still having a little trouble getting him back up. But I was like, Alright, go back to bed and we'll reassess at 10 o'clock. And James, we got his blood sugar back up, he slept for a little bit. And then he came downstairs a little bit after 10 o'clock. And he was like, It's 1015 I think I need to go to school. Like that's the middle ground, right? Like, let him get the extra hour of sleep because he had a crappy rough night. And we woke up multiple times. Temp Basal him down 10% for the next five hours for the school day, because the site seems to be like super absorbing. And we'll figure out later tonight, whether we're going to just keep going at Temp Basal down while this pods on or whether we're going to move it to our typical like back of the arm or upper buttocks. Like

Scott Benner 1:08:14
I've done exactly what you're talking about. There are times when I've said to art and like, I don't care get up and go, like, you know, and there are times where I'm like, You know what, this is reasonable. You know, she, she's, you know, we got out of bed this morning. And I don't know, you found out that her blood sugar was higher than we wanted it to be. And I'm going to give her a bunch of insulin. She could sit here for a half an hour while I make sure that a that this wasn't too much insulin, and B where I make sure it's working because I don't want to be I don't want to be in the situation where an hour and a half or an hour I'm texting or saying like, Hey, we're gonna make another large Bolus, not knowing if the Bolus is right. It's not near food, like, like there's some things that are just common sense. And I and at some point, so you kind of treat them like people who need some, some comfort to without without making them into somebody who goes, Oh, I stubbed my toe. I can't do anything.

Irene 1:09:06
Yeah, and you know, and I think that's the trick, right? I, you know, I listen to some of the adults you talk to who it is interesting. There are so many of them who I hear like, yeah, my parents kind of said like, you better figure this out. This is yours to do, but they're also very protective of their parents and they don't want to say that. Like they didn't have support from their parents. And I listen to parents now who are talking about, you know, how much their kids are doing independently. I'm, I want us to in a lot of ways follow James's lead. But I don't want to baby him so much that like we get too. He wants to go to college like on the West Coast and you don't know how to do that, or Yeah, we don't know how to do that

Scott Benner 1:10:08
shooting for you just always kind of shooting for the middle.

Irene 1:10:11
Yeah, exactly. So like he, this summer, he wants to go to camp, we did a family camp last summer. That was just a weekend. He loved it. He wants to go back to camp. But he wants to do the full week with the other kids with out his parents. So we had great conversation with the camp coordinators about like, what does he really need to be able to do independently to go to camp for seven days without a parent? And what can you guys realistically do for him? Yeah, he doesn't, he doesn't do his pod changes. He doesn't change his Dexcom. Like, he has put the insulin in his pot a few times, he has pushed the buttons on the, you know, touchscreen of his PDM a few times. He usually picks his sight, but he doesn't do it independently. And if I say to him, like he can finger stick himself, but he doesn't want to. So if I say to him, like, Hey, James, can you do your finger stick? He's like, Oh, it's so much work.

Scott Benner 1:11:16
Well, listen, last night last night. But I mean, my kids almost 18. And last night, I came into the same room with her. And I said I forgot what happened. She had I do forget what happened. Oh, she just got home from her Disney trip from school. And we're still in the we're still getting her settings adjusted back because they were significantly different for walking around in the heat at Disney. Oh, I'm sure. And so we had this, you know, we adjust it back a little bit. And you know, it was going okay, but there were, there's more to do. And I said to her, I'm like, I just want to do a finger stick here. Because, you know, I want to make sure that the next thing I do was is 100%. You know, right? Because I think I'm right here. And you know, I want to just I want to be done with this. So anyway, I I'm sitting closer to her bag than she is. And I pulled out the meter, the Contour. Next One, which is available at contour next one.com forward slash juicebox. And I pull out the test strip and I stuck the test strip in it. And I handed her the lance and the meter. And there was like I reached my handout with it. And she looked at me. And we were just both staring at each other thinking the same thing. Like you're doing this not me, like get like she's looking at me like, I mean, she was had her laptop open, she was watching something. And I know she wanted to just like stick her hand out and get her blood sugar

Irene 1:12:36
tested, and probably stick out her middle finger for you.

Scott Benner 1:12:39
I just I pushed the meter into her hand. And I was like, I don't know what you think is happening here. But I'm not doing this, you know, she, you know, there's no problem. She tests her blood sugar. But there was that moment where both of us were like, you're doing this not me, you know, she had the same feeling. It's just it's tiresome doing stuff like that over and over and

Irene 1:13:00
over. And it's, you know, I've had times where I say to him like, Okay, this is your carb cow. Like, you need to Bolus yourself for dinner. And he kind of gives me the groan and I'm like, like, you gotta do it a few times to prove you can do it at camp, right. And I'm like, because I'm like, if you don't want to go, that's fine. Just tell me you don't want to go. But if you want to go, we need you to be able to, like Bolus yourself for your meals and pull out your Dexcom and look at it and see what your blood sugar is. And when you're low look at somebody at camp and be like, Hey, I'm low, like I need juice or whatever. The truth

Scott Benner 1:13:41
is, it's gonna take those examples. And he's gonna have to do them. I mean that that's how you figure it out. Like I mean, listen, Arden was in Disney. Thursday, Friday, Saturday, Sunday, she flew home Monday night. They did provide a nurse who was you know, on her Dexcom and watching her I would say probably three times the nurse like you know, she usually overnight where Arden would I have to admit one time she dipped down to like 66 I wouldn't have done anything about it. But I understand the nurse did like I could tell it was coming back and and it wasn't gonna get lower. And Arden's. The nurse told me later even when she woke garden up and she's like garden art and it's the nurse and art and picked up her phone looked at her blood sugar and went Why are you bothering me? I'm okay. She's like no, you're 66 and are just like this is going to be fine. And she said just as she was getting ready to described or look do you see how the lines bending in the other direction? She thought why don't I just drink some of this juice real quick and like make this lady happy and like be done with it you know? Meanwhile the nurse was like she was terrific. But that five days was a great like it made me feel good about like okay, like she'll be able to go to college. Right and then we have a we have a situation coming up soon. Where Kelly and I I have to be away for a number of days and Arden's like, I'm going to stay by myself at the house. And like everything inside of us like, no, that's not a good idea. But what I really know is that this is a perfect time to try it, because at least she'll be in our house. And, you know, we have neighbors, and we can set sort a little like, we can set up some safety things she won't even know about, you know what I mean? And let her try to get through it, it's a good practice run, because she is gonna go to college, you know, right,

Irene 1:15:30
we would love to James still goes to the nurse's office. And we would love to progress to that, like texting with him. And he doesn't go to the nurse's office as much, but he's just not ready yet. But I am hoping that the experience of Camp lake in a, in a really supportive environment that he wants to be in, like, kind of helps him make a little step towards a perfect, it's perfect. And if it doesn't, I mean, if camp is a flop and

Scott Benner 1:16:04
the next leg up, then the next thing will help. But I mean something, you just have to keep doing those little things. I mean, back, it listen, Arden's either go into, you know, I don't know too much, or a person, like Arden applied to a number of colleges, and then got into all of them. And so she's got her choice at the moment. And, you know, as she whittles it down, it becomes clear, she's either going to go into the city, or down to Georgia. And, you know, there's part of me that's like, well, the city is only an hour away, like, that's good. You know, because if something really went wrong, I could get there an hour. But then I thought like if something went that wrong, five minutes is too long, like forget an hour, right? So what's the difference? If she's in New York? Or she's Georgia?

Irene 1:16:49
Well, no. And I mean, how many kids go to a school, spend a semester, spend a year and they're like, this isn't the thing for me. And, and then they, like, either come home and regroup. Or they know what they, you know, where they want to go, and they apply to transfer somewhere. I mean, it's, it's not set in stone that like any of our kids will be in that one spot for those four years, yes,

Scott Benner 1:17:20
a lot of things are gonna happen. So you have to take advantage of the opportunities to practice. That's pretty much it, right? It's doing the same thing, and figuring it out how to how to handle it, and you're going to have these kids, anybody who's listening to kids not gonna live with you forever. So hopefully, yeah, to take advantage of those situations, you know, I mean, I'm having too good of a time talking to you. So if I don't just say goodbye, we're not going to stop. So we're done. Okay, it's over. Is there anything that you wanted to say that I didn't bring up?

Irene 1:17:52
Yeah, it's funny, because I initially reached out about the nurse thing, like you've mentioned multiple times, that nurses seem to have a harder time. And, and I think you're right, and I, I, I think nurses have to remember to, you know, as they're advocating for their child, right, they have to advocate for themselves, because we go to nursing school, and we learn a little bit about a ton of different things, but we don't hone in on any particular thing. And then as we start our careers, we do tend to specialize like labor and delivery, critical care. And we don't have a ton of exposure to type one, we, we most of us probably see a few type ones, but not tons of them. And then the other thing we have to remember is that the diabetics that we do come in contact with, especially if we work in the hospital, right? Are not, they're not representative of everyone. And we have to learn how to kind of separate those fears, like not everyone that I saw in a wound care center represented the overwhelming majority of adult diabetics, right. And then I think we struggled to because the way we see things managed in the hospital is not what day to day home management looks like. And because we have familiarity with hospital based management, sometimes home management is uncomfortable. And it's very different. And then you have to learn how to compartmentalize, right? I can't take the style of management that I use with my son, and then use it with patients in the hospital, but I can take understanding the importance of a CGM or an insulin pump or carb counting an advocate for my patients in the hospital. This is really cosmetic I'm a huge advocate and my own hospital. We now put CGM on newly diagnosed patients before they leave the hospital. Wow, good for you. And we have, we always had a way for patients to keep their pumps. But we didn't necessarily advertise it. And so now we're doing a better job of saying, if we want someone to take their pump off of explaining why we want not just because we're not comfortable with it, but what's going on in this situation, that we're asking you to come off your pump, or coming in, and asking them to be more proactive to say, like, you're here, because you were in a motor vehicle accident, we're a trauma center, and you have a fracture, and we need to place that bone, we see you're on a pump did you want to stay on your pump. And it is hard. And it's because there's an assumption that you're just, you're just going to know what to do and you don't and then you feel paralyzed by it. And you have to separate what hospital management looks like and hospital complications with what your life with T one D being the parent or being the individual yourself is going to look like,

Scott Benner 1:21:20
right? That's great. And you're you put that effort in at your own institution, and you'd have much trouble getting those changes made.

Irene 1:21:27
I think I was at an advantage in the position that I held that I have, like direct regular contact with executive leadership. And I was able to come back and say to them, like, I would just really love the opportunity to sit down and share my experience as a newly diagnosed parent with you. And what I think we could do differently. And it didn't happen overnight. You know, but it was information sharing. And, and being able to talk with other families, and then the leadership of our pediatric department being able to go back to our endocrinologist group and say, hey, you know, how do we look at this? And some of it became like, education with like, I got called one night that there was a T one D patient who was adamant about keeping their pump and the trauma resident was like, Oh, no way, are we doing that. And I was able to come up and like sit down with that resident and say, This is why your patient wants to keep their pump. This is why trying to push them off of their pump is not a good idea. And let me give you some personal perspective. In this situation. Yeah. And look like they have, they also have this Dexcom. And so you're going to be you're actually going to have more information, you're going to be able to walk in at any point, and be like, Hey, what's your blood sugar look like? And they're going to be able to answer that question for you.

Scott Benner 1:23:11
Yeah, I thought a lot of your stories today revolved around not just doing things the way they're always done, because they're always done that way. Like, like, seriously, there's it's a main theme running through how you how you impacted all of this. And it's just, it just shows the I mean, I guess the I don't want to call it pushback, but the answers you got back from a number of different people along the way, just were very reflective of well, this is how it's done. I don't ask any questions. This is just what we do. You know, and it's so important to, to follow common sense and to sometimes have to show it to other people.

Irene 1:23:51
And if you can give a logical explanation, right, like, why you know, like in the hospital, if I can explain to the bedside nurse or to the resident, or to a director of a unit, why it's actually in their best interest to let this patient keep their CGM and keep their pomp, right. Like, why is it an advantage for you? It's better care for them. Oh, and because healthcare is a business, whether we like it or not in America, health care as a business, why you're gonna have more satisfied customer being part of it, too, then you can start to win people

Scott Benner 1:24:35
over. Yeah, well, there's a lot of good reasons to do it. And I've also

Irene 1:24:38
had a situation where I've gone to an emergency call and walked in a room and the patient is completely unresponsive. And we're not quite sure why they're responsive. And I have physically taken their pump off of them. Like this patient can no longer manage their pump. We don't know what's going on. The pump is going away.

Scott Benner 1:24:57
You have to start over again at that point. Yeah, yeah. Oh that's a completely different situation but yeah, that makes sense as well. All right. That's it alright Irene listen, I would tell you that you you are very common sense the person I like it a lot. I would say something like if you ever you know need a new husband and both of us are in the in the bump look me up but I gotta be honest with you I'm not raising your 75 kids so it doesn't matter. You're on your own okay. But I love talking to you. I really did.

Irene 1:25:25
Thank you. Thank you. Appreciate it. Oh, it was great.

Scott Benner 1:25:34
A huge thank you to one of today's sponsors. Je voc glucagon. Find out more about Chivo Capo pen at G voc glucagon.com. Ford slash juice box. You spell that? G VOKEGLUC AG o n.com. Forward slash juice box. And don't forget to find touched by type one at touched by type one.org and on Facebook and Instagram. Last but not least, the private Facebook group Juicebox Podcast type one diabetes. It's worth your time.

Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.