Sugar Mama's Podcast: Type 1 Diabetes

#51 The Omnipod 5 Clinical Research Trial

December 23, 2021 Katie Roseborough Season 1 Episode 51
Sugar Mama's Podcast: Type 1 Diabetes
#51 The Omnipod 5 Clinical Research Trial
Show Notes Transcript

Today I had the pleasure of talking to Skiy Berglund whose daughter, Vera, has been participating in the Omnipod 5 (OP5) Clinical Reasearch Trial (CRT) for the past year! If you're anything like me, you've been waiting patiently since 2020 for the new closed loop system from Omnipod to drop any day now. It is in its final stages of getting FDA approval. Bring it on! Today, Skiy answers all my questions about the OP5 system and what it was like participating in Insulet's CRT. If you've been waiting, too, and are dying to know more about what OP5 has to offer from the perspective of a type 1 mom, then this episode is truly a treat! 

Plus, Skiy tells us all about her two T1D children's books and the adorable story behind them! Check out the affiliate links below to find them on Amazon!

SKIY'S BOOKS
The Girl Who Chases Unicorns
A ONEderful Story about Type 1 Diabetes: Becoming V. Victorious

FIND SKIY ON INSTAGRAM
@ouronederfullife

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Katie:

This is episode 50, one of the sugar mamas podcast. And today I get to talk with sky sky as a fellow type one diabetes mom, whose daughter has been doing the clinical research trial for the new Omni pod five closed loop system that should be getting FDA approval any day. We are so excited for that to come out. And I was thrilled to get to talk to sky today, all about the new Omni pod system, what their experience with it has been like, what features it offers. And more, I also get to ask guy about the two type one diabetes children's books that she's written for her daughter Vierra. If you guys have been waiting and waiting for the new five system to come out like me, or if you're just curious to learn more than this episode is definitely a treat. Enjoy. You're listening to the sugar mamas podcast, a show designed for moms and caregivers of type one diabetics here. You'll find a community of like-minded people who are striving daily to keep their kids safe, happy, and healthy in the ever-changing world of type one. I'm your host and fellow T one D mom, Katie Roseboro. Before we get started. I need you to know that nothing you hear on the sugar mamas podcast should be considered medical advice. Please be safe, be smart, and always consult your physician before making changes to the way you manage type one diabetes. Thanks. Hey everybody. I am here with sky today and sky. I'm going to let you introduce yourself and tell the listeners what your connection is to type one diabetes.

Skiy:

Okay. So I am the mother of a type one diabetic. My daughter is six. She just turned six. She was diagnosed just before her third birthday. Actually on my husband's birthday, we ended up being in the hospital. That was her by a versary date. She was. Oh, so showing signs of like your typical signs. She was actually, I thought she had a UTI. That's what we were thinking. Cause she was urinating a lot. And luckily we were able to avoid DKA. We went in and take to take her in to get no check for a urinary tract infection. And luckily our endocrinologist was smart enough to test for urine. And they, she realized she was spilling glucose into it, so we were able to catch it pretty quickly. But yeah, I'm the mom of, of one of one type one diabetic.

Katie:

Yeah,

Skiy:

I'm not sure what else.

Katie:

that's it right? That's that's our connection. Yes, so sky and I connected, well, we we've been following each other on Instagram for a little bit, but she recently commented on one of my posts and mentioned that her daughter had been in the clinical trial for the new Omni pod five. System. So I'm just like sitting over here waiting for the day when they launched this new system. And I asked guy if she would be willing to come on and talk about it. And she got permission from the trial coordinator, right. Yep. And so here we are, cause I have about a million questions. The list of questions I sent sky today is the longest list of questions I've ever sent anybody. But I think they're, they're pretty rapid-fire so we should get, get through them pretty quick. So so your daughter, how long had she been on Omnipod before you guys started the clinical.

Skiy:

so we were diagnosed in August, August 31st of 18. And then we got on NEPAD March. I want to say the beginning of March of 19. And she's been on since then. So she's been on Omnipod for two and a half years. We got onto that the clinical trial we've been in it for about a year and a half now or over actually. No, you know, it's actually been a little bit over a year. I remember because I just saw one of my Facebook memories. So it's been a year and a couple months.

Katie:

Okay. So you guys weren't doing any like DIY loop or anything, like that before the clinical trial, did you say you had been on dash before you started the trial

Skiy:

No, so we weren't on dash we run. What does the arrows or the, how you say that? Yeah. We, we did not get onto the dash system. I was waiting for our insurance to approve it, and it was taking a long time. So we were on the original and we were not doing any sort of closed loop. I, I looked into it and I, I was just literally complicated to me. I didn't really get that far into my research with it, but yeah, we didn't do any of that.

Katie:

Yeah, I know I have the same thoughts. I mean, I was kind of like, everybody just kept talking about this new system that was coming out. So it's kind of like when you know, that's on the horizon, you know, you're kind of like, I don't know that I want to throw more and more thing in my wheelhouse of things to learn. just wait, but. anyway, I've, I've heard good things and we are also on the arrows too. So I feel like it would be doable. I just, I don't know. I'm just holding out that. the is going to come out any day now, so we'll see. Okay. So how did you guys hear about the clinical trial?

Skiy:

So I got a letter in the mail from my endocrinologist's office. They were participating in the trial. Our endocrinologist is the, is in charge of it I guess, through their, through their office. And they were looking for patients in my daughter's age range, which

Katie:

Great.

Skiy:

believe it's two to five. So when we started it, she was five and she just turned six. She is, they also do from six to 12. Is there other groups that they were doing? So we are now into that, into that age group, but we had an invitation from the office.

Katie:

Okay, so you, you're not having to make any special trips to other endocrinologists, other teams of people you, you check in with your own endocrinologist. And the study is run through their office.

Skiy:

Yeah, it was really nice

Katie:

Yeah.

Skiy:

is through the same office that we go to. So we didn't have to to any other locations. You know, just come in for normal visits and then a couple extra in between. And we have to do a lot of.

Katie:

yeah.

Skiy:

Phone calls and whatnot, but yeah, nothing, nothing luckily regarding travel, because that would have been a pain in the back.

Katie:

So what is it like when you're in a clinical trial with, with Omnipod, you know, a piece of durable medical equipment, or I know the pods sometimes are run as a pharmacy benefit of your on dash, but are you ordering them or are you picking them up at the pharmacy? Is your endocrinologist handing them to you? How did that work?

Skiy:

So everything is provided for us because it's, you know, nothing's approved yet. So you can't have it ordered, it's a special pod. The desk, the desk com I believe is the same. But the pods are different because they have to communicate with each other. So everything is given to us, any of the supplies that we need that way, you know, they make sure that we're always linked up and hooked up to. To the system because they follow us all the time. That way they can keep an eye on her and how her numbers are looking.

Katie:

So what's the setup like, like when you're, you know, getting the, the system set up with the, with the PDM, or maybe you didn't have a PDM, maybe it was an app on your phone, but what did that look like to kind of get the hooked up with the Dexcom and all the settings set up?

Skiy:

So it was pretty easy for us because they do everything for you for the initial setup. So they give us a device. They give us a phone, it's a locked phone, it's an Android phone to my understanding right now, it's only available through the end Android system. I don't think that they have been able to get it through the iPhone yet. So they give us a locked I Android phone. And on that phone, all we can access is an app. You'd like you turn it on and you put your code in and it takes you right to the screen. And the screen is a combination of the Omnipod and the Dexcom. When I, when I've seen screens like the dash apps, it looks kind of similar to that. From what I've seen online, I haven't actually like seen it in person, a dash app, but it looks, it looks very similar and we do everything from there. So we control. You know, her her Dexcom and we give her all of her doses. Everything is done just through that one app. And I, assume I'm not a hundred percent sure obviously, but I assume that when this is released, provide your own device and it'll be app that you download to it. And just kinda like, like you would now with the Dexcom, you know, if you have a phone that you use instead of the. The receiver that's given to you you know, you just have one main device, then we can still share, like, we were still on the Dexcom share on my, my phone and my husband's phone. So that's all the same. We can still see what are.

Katie:

So when you say that you do everything on the phone, so you are. starting. You're no longer getting into the Dexcom app to like start a new sensor session or pair a nutrients meter. Like you're doing all of that through this one Omni pod app.

Skiy:

So you, you have a Dexcom app inside of that. And you do pair everything. All your, your setup for Dexcom is the same. It's not any different. You go in, you, you do the exact same warmup. Everything, all the instructions are the exact same. There's no difference. The only difference is when you set it up, you have to then pair the transmitter to your um, to pad device which is in the Omnipod app. That way they can communicate with each other. The only thing that's like a little bit, you have to be careful when you're doing the setup that once, you know, warmups done or you're doing a new pod, that the device is close to, the person that you know is wearing the PDM and, or the CGM and the pod. Otherwise the transmitter will not connect right away. So you might have to do it a couple times. So we have to keep it, you know, within like five feet or for. The system is a little bit different where like right now, well, like for you, your, your daughter can wear, you know, let's say like her, her pod on her arm and her Dexcom on her stomach, you know, they, they don't have to be on the same plane of the body. This system, the pod and the CGM have to be on the same plane in order to read, which is kind of limits a little bit on where you can put, you know, placement of the devices. We do pretty much just the backside of my daughter. You know, if it's on, if we have the pot in one arm, we have to either have the CGM on the same leg on like the same thigh on her upper buttocks on that same side or on her other arms. So that it's all in line. We can't do, you know, one on the back one on the front or they won't register, which it took a little bit to get used to. And on rotational, we tried it, we try our best to rotate sides of the body, you know, to help her with her her areas, make sure she's not getting scar tissue buildup. You know, she doesn't have a lot of real estate she's a little so it took a little bit of, of time to figure out how to, how to do that properly. Sometimes we end up changing the CGM, like a day early, just so that we can get it on the three-day mark, you know, To try and get everything SWAT. Over the opposite side of the body. Does that make sense?

Katie:

Yeah, it does. And that's interesting. My daughter currently, I'm hoping that we can get over this hurdle at some point in time, but she will only wear. God's on her thighs. So I guess that would mean we would have to like if she had, and she wears her Dexcom on the back of her arm. So I guess if we had like the Dexcom on the back of her left arm, she would have to just keep the pod on her left thigh and just kind of rotate the site around that leg until we switched the Dexcom over to the other side.

Skiy:

Yeah, that's pretty much how you would have to do it. When you you'd have to probably cut your CGM short a day and switch everything over to the other side, unless you can get her to rotate more of her body.

Katie:

Yeah, I think she's, she's becoming more open to the idea, but we haven't tried it yet, but I have heard, I wanted to go back to the the whole Android phone app situation. Cause I've listened to a few things about the system and I've read a couple articles and everything I've heard and read says that if you have a Samsung galaxy phone, which we actually happen to have, then you will be able to just have access to the app. I'm assuming you're going to have to pay for the app. Sure, but I'm assuming you are through Omnipod, but you will be able to download the app onto your phone if it's a Samsung galaxy phone. But if you don't, you will have to be given like, like you have like a lockdown Android phone to be able to get to the app.

Skiy:

Yeah, I'm really not sure how they're going to do that. I haven't asked to be honest with you. And they really haven't, they haven't really told me, but I, I, I would guess you're probably correct. I'm hoping I was reading online though that it's I know I have an iPhone, my husband has an Android and I'm hoping that, you know, by the time it's released that it'll be available on iPhone.

Katie:

Well, I know that I know that they're going to, they're definitely working in that direction. Like I don't, I don't know if it will be available immediately. When they launched, but it, I know they're working towards that, but it sounds like even if you do have an iPhone, could still be given, you know, how they give you a PDM. Now, if you're on the classic system, like the arrows, or if you're on the dash, you still get a PDM. So it's, I guess it would kind of be the same thing where you would still, you would just be administered at a separate device. So, so don't lose hope, apple people there. I think there would be a way to get your hands on one.

Skiy:

Yeah,

Katie:

Okay. So what about what about. Entering in her settings. Is that pretty much the same as it was on the arrows pods that you were using? Like when you go into the app, you enter in her basil rates or car ratios? Insulin action, time, all that kind of stuff.

Skiy:

Yeah, all of the

Katie:

You'd have to, I guess

Skiy:

Yeah. Everything's the same. You still have the targets. You know, you have I don't think anything has changed with that really. It's just a little bit different to get used to, especially like, I, you know, I was on the same system you were on, so it wasn't a smartphone, you know, I'm using the little little device. And so it was, it's a little bit of a different setup. I don't know if it's similar to How How dashes it might be in terms of how their app is. Cause I, I would S I mean, everything has to be entered in there, so, but yeah, every everything's, all of those are the same, like all of the same. I don't know, you know what I'm trying to say?

Katie:

Yeah, the settings. Sure. The Bazell programs and

Skiy:

Yes.

Katie:

ratios. I know what you're talking about. Okay. So, all right, let's talk about the. insulin delivery, because that's why, why everybody's so excited about this thing and why everybody raves about other automated systems like tandem with their control IQ. so I want to know about the target range are what is the lowest you can set the target at.

Skiy:

So targets are from one 10 to one 50. So one 10 is the lowest.

Katie:

Okay.

Skiy:

Ours are set. They range from like one 30 to one 50 is what our endocrinologists know. We don't have it at one 10. But we can keep her below that we just have to work a little bit harder to do it because the system will shut off so that it's not delivering. Bazell so there's like, there's two ways of going about with this and there's an automated mode and a manual mode. So the manual mode, we were not allowed to use it because we're in the trial. So, you know, everything has to be automated because they want to see obviously how the closed loop is working. If you turn off the automated, then it friends into. You know, the regular system where you're doing more of the control. The only thing with that is there's no like extended bolus option. I don't know that they're going to do an extended bolus option. I'm not sure about that, but I know there's none on this. So we, like I said, I haven't done anything with a manual, with an exception. When you go to change the pod, it automatically puts you in manual mode. So you have to get back into automated after it connects to the Dexcom, ask you to remind, remember to do that. Otherwise you won't be in the closed loop. So sometimes we occasionally will forget. And then, you know, an hour later it comes by and we're like, oh gosh, her sugar is suddenly spiked. Because we never put her back in automated. So it'd be nice. I don't know if they're going to change it, put a feature on there to like give you an alarm or like a reminder that like, well, actually no, there is, there was a reminder that that tells us that we need to be an automated. I think we're just, we're just so you speak hearing reminders. We don't, we don't always think about it, but it'll time at you. I, but with the automated system,

Katie:

Oh,

Skiy:

So it buys increase or decrease. So like her, her basles right now, they set everything up for us. And her basil, it goes by either 0.05 or 0.1, it'll give her, and it will ramp up based on, you know, what her parameters are that they set. I. It will give her like her usual Bazell, you know, let's say every 15 minutes or so. Or it'll give her more. So if her sugar is really high, if you look in the history, sometimes it'll give her five minutes or 0.10. I first is coming down low. It'll just shut off for awhile and it won't give her anything. it's, that's that's I guess the smart feature on it. It kind of, it like learning. How, how she does things. I mean, obviously it's not going to know if you active, it's not going to know what she's eating, but it had like a basic idea of what a day to day looks like for her. And it, it doesn't do the same thing every day. It, it will change things up different times a day. It just kind of is based on what her parameters are and what what her sugar levels yet.

Katie:

Okay. So yeah, I've heard that it's almost a little bit of a smart system where it will like learn. What her Bazell needs are And adjust

Skiy:

And stuffed

Katie:

but that just does it like, on a

Skiy:

like,

Katie:

five minute by five minute basis or whatever, know, each of the check-ins is correct. Like

Skiy:

correct. Like

Katie:

it's not actually going into your settings and changing her Bazell

Skiy:

her people profile like

Katie:

It's just adjusting to

Skiy:

the dusting,

Katie:

the system is giving her what the system thinks she needs based on experience and past.

Skiy:

Yeah, that's correct. It either ramps up or it will shut off for a period of time, depending on what's going on. But it doesn't

Katie:

Okay.

Skiy:

doesn't give automatic corrections or anything, you know, if, if she needs a bolus, we have to give her a bullet. It doesn't do that for her.

Katie:

Okay. I'm just going to say that again. Cause you cut off and I don't know if people will be able to hear that or not, but Skype said that it does not give automatic boluses. If, if she needs a heftier correction, they have to do that for her. Okay. I want to ask, you mentioned that there was no extended bolus feature. Is that only in manual mode or both modes there? There's no longer extendable.

Skiy:

If they're going to change that for, you know, the actual release of it, or if that's just something new, but yeah, you cannot do an extended bullet, but you know, it was really hard for my husband to get used to because he was really used to being like in control and doing the extended bullets. And it was definitely a learning curve because we do have a little bit of, you know, less control. So we more, so instead of doing extended bullets, we'll just give her. We'll break up her doses and just set an alarm on our own. If we feel like she needs, know, a little bit now, and then, you know, her carbs are gonna kick in later and we'll give her a little bit more like tonight she had pizza and ice cream. And so we broke up her, her doses, her doses into two different doses where, you know, with the extended bolus, you can set that. Just forget about it, you know, it'll do its thing. So that is kind of something that we do miss. But I don't know, like I said, if they are going to add that back in, I'm not sure what the situation is.

Katie:

Hmm. Okay. That's really interesting. I mean, I guess the idea is that the system is kind of mimicking an unextended bolus for you without you having to necessarily think about it. But yeah, that will be an adjustment because when I do an extended bolus, now I, you know, you think about how much insulin you're giving up front and then what you're going to extend out into however many hours you set. So yeah, that'll be J cause, then you'll only have to think of. What you'll give up front and just trust that the system will adjust accordingly, right?

Skiy:

Yeah, and it, and it works, you know, it's diabetes. So you can't always do. You can always get it right. It's just the way it is. But like tonight it worked really well for us just to break up her dose. He's 1 0 9 steady. So I'm happy with that. You know, so you just kind of learn how to do it and hope for the best, a lot of, a lot of diabetes. So just kind of hoping for the best, we all know.

Katie:

Yeah, absolutely. So I'm curious to know, you said you are able to keep her below targets. But it requires a little bit more work because, you know, I, I mean, personally, I love it when my daughter's like sitting at like 80, somewhere between 80 and a hundred at night. I think that's great. So I, I don't know that I would love her being above. I mean, you know, certain certainly there's nights where she's above that, first of all But like, I didn't have that option, I don't know. that I would, I would be thrilled, but what, so how do you, what do you mean by you're able to keep her, keep her there? It just requires a little bit more work.

Skiy:

So like for me for us, what I have done is I have. Set our alarms a little bit lower. So like my high alarm goes off at one 40 that way, you know, if we need to give her an, a little bit of an extra correction, just to be a little bit more bold you know, we can get her to kind of come down a little bit, but with her threshold being at one 10, if, if you do go down lower than that, the basal. It's not going to ramp up as much. It's going to probably shut off for a while and just give her a usual basal dosage instead of anything extra. But depending on, you know, what's going on in the, with the body and how any meals that are sitting, sitting in the system are going to affect the body. It could go a little bit higher than maybe you'd like we generally, I mean, I can keep her lower. Like if I, if I were to try and keep her between 80 and a hundred at night, I'd say I'd probably try and get her down lower to like, closer to like the 80 level before, like at bedtime and have it in my head that she'll probably be up to like one 10 you know, within a couple of hours, but it's not gonna, it's not going to spike like crazy. You know, a times are actually really nice. That's what. My absolute favorite things about the system. Because before we were on this, my times were terrible. You know, we'd, we'd be, if we went high, we were fighting the highs for so long. And then in the middle of the night, we'd have crashes we just weren't getting any sleep. And when we went into the office to sign the paperwork for this clinical trial and they were like, you might, you might actually get some sleep. I, I cried. I mean, I just cried because. Oh, my God, that would be amazing. You know, and none of us diabetic parents really truly sleep, but like

Katie:

Yeah.

Skiy:

would be, would be. And I mean, honest to God. It's yeah, I, I, I sleep so much better because she's, she's a lot more stable at night and my times before.

Katie:

That's awesome. That's wonderful to hear. I feel like that's the hope of that's like the one wish of all diabetes parents is like, we just need more sleep. We would be, we'd be so much better about this. We'd be so much better at this. If we could just get a little sleep and it's so true. I mean, gosh it's so it's exhausting. It's so exhausting.

Skiy:

you another one of my other favorite, absolute favorite things.

Katie:

Tell me all the good things. that you love.

Skiy:

So with the other system as you know, you know, it says that can dose, like, you know, the original system, it says it can dose within a five foot range, but I don't know about you, but I know that for us, sometimes we would have to be like on top of my daughter in order to get it, to give her a dose. And it's like, come on, this is, this is much closer than five feet, you know? And still it was having problems with. I can. So I'm in my, I'm in my bedroom right now and she's out in the living room. And I mean, even if let's say she was outside at her little place, that right now I could dose her through the wall. It's amazing. This range is incredible. I don't have to leave my bed at night to dose her. If I get an alarm that she's high. I just wake up, roll over, look at it. I dose her and it doses her to her bedroom. It is incredible. So that is my, one of my absolute favorite features about this is eight. It reads and it registers so much better.

Katie:

Oh, that is music to my ears. Yes. I love being on the pump because I don't have to like wake her up to correct a high blood sugar at night. And you can just post some buttons and go about your business. But that if I don't have to get out of bed, that's even better. Yeah. And you know, you're, you're like hitting your spouse and you're like, it's your turn? And they're like, no, I went, I went, did it last time and I'm like, no, he didn't see it's your turn. And that would be great. That's fabulous to hear. I just need to be able to dose her while she's at school. So if they could just make the range like 10 miles, that'd be perfect. Yeah, I don't think that's going to happen, but I've heard, I've actually heard that that is possible with DIY loop, but I've also heard that it can be a little tricky and could, can get you into trouble sometimes. So probably just shouldn't even try that. If we ever go the DIY loop route. Okay, so nighttimes are much better. That's amazing to hear. What, what is your experience been with like activity? Like if she is just running around outside, have you noticed that you've had to, you haven't had to treat as many lows,

Skiy:

So system, and I don't know if you've read about it. It has a feature on it called. And it's great. You set it for whatever duration you need. It's that for? I, we only usually set it for one to two hours. I haven't exceeded that. But you can use it for like, if you, if you know your child's going to be more active if you're going to go do something exciting and you're going to expect a low we use that a lot. If we catch a low. So like, let's say, I don't know, last week she was like 1 96 double down. Okay. Well, all of our, all of our corrections have kicked in and now we're going to be plummeting into the low. And so we just knew it was going to happen. We'd put her on hyper protect and what that does. It automatically changes for target glucose to her Target range to one 50 and it will put it at one 50, which is the max, you know, target for whatever amount of time that you, you said it to. And it just. Prevents the system from up those basal rates are those basal doses. And I'll tell you, it really works. It really helps a lot. We've been able to catch a lot of lows, a causing spikes, because then we will just turn it off. Once we see her sugar starting to come back up and it'll just kind of even itself back out we have also used it last year. We went on a hike in Tennessee in the mountains and. We used it for that. We didn't have any lows while on the hike. So the hypertext feature is really.

Katie:

Okay. That's awesome. That's awesome. I like that a lot. what was I going to ask when you said, hold on, you just said something about. Oh, you said that you can put it into hypo protect mode and then you don't notice like a rebound high later. Cause I know sometimes like in the summer, if we, for instance, like turned, did it, did a temp, Bazell decrease all the way down. So we turn the insulin all the way off. If she was going to be super active or swimming in the pool or whatever, you know, it worked great. But then later we would notice this like creepy. You know, cause she was without her Bazell for so for so long. And we, we played around with it and got better at it, like realized we didn't need to turn it all the way off and blah, blah, blah. But so do you notice that you can kind of put it in that mode, but then later you don't see this like creep up or rebound high or anything like that?

Skiy:

You still have to watch it. I wouldn't like leave it. And you know, if it's, if she starts coming back up, we don't just let it go until it expires. You know, we, we shut it. So we keep an eye on it. And as long as we turn off the hypo protect, once we start seeing her on the rise, then it it'll usually level out. We've had a couple that we have gone up higher than we would like. But it's not often, like right now, I actually ended up putting her on hypo protect before you and I started because she was trying to, she was trying to get. And I knew that she was probably going to go low in the middle of us talking and she's on hyper protect still she's she has 25 minutes and I mean, one 10 study. So I'm not going to turn it off. I'm going to let it, I'm going to let it ride out. But if I start to see it go up, then I'll, I'll shut it off. And what's great is I can just be sitting here talking to you and I don't know what she's doing out there with my husband and her brother, but I'll be able to turn it off without having to tell her, or have her come in here. It's because of the great.

Katie:

Yeah, that is great. I was going to ask you about that. Like, do you, have you found that the range is the same for turning that on and off too? Okay. So that's, that's great.

Skiy:

What do I want to say really fast too? I want to just say I think my favorite thing about that range is her being able to be a little bit more normal, you know, like I don't have to stop her from playing. I don't have to stop her from. From doing the things that she's doing to make her come over by me to give her a dose. And I think that's really emotionally good on her because she, she's not as disturbed by her diabetes as, as much as she was before. So I just wanted to add that in there because I really, really, really, really love that. I just love it so much.

Katie:

Yep. I was thinking about that too. Cause there's been, you know, the phone is so great because I don't have to like go track her down and barge into her friend's house. You know, when she's two doors down or whatever to get her, I can just text her or call her. And for the. She, she gets it and she'll just come home and treat a low if she needs to. Or I can text the parents, obviously I know whose house she's at, so I can text the parents and have them give her a snack or send her home or whatever. But yeah, I do like that, that you don't have to interrupt their, their lives quite as much. That's great. Just let them be a kid. So how are you, like, do you have to check in frequent? You said they're following you. So do you have to do like extra visits to the endocrinologist or is it just, they're kind of like checking in through email texts calls. How does that work?

Skiy:

so this, this trial has been extended twice now since we've been on it. And originally I, I, it's kind of changed all around a little bit. I want to say our first. Bit of it. We were checking in a lot more frequently, but it wasn't well, you figure it was, it was during COVID, which kind of seems to be around a little bit. So when some of the visits were supposed to be in person, it was acceptable to do, you know, a video call. I, most of the, the visits though are not actually like in-person visits. They're just phone calls where I talked to our nurse, the nurse asks, asks if she's had Any issues with her sugar, if we've had any hospital visits, if she's had any illness anything that we need to discuss. And she just looks over the settings and, you know, makes any changes. And generally that's like once a month that I talked to the nurse, I believe it's going to be extended out to like every, every month and a half. I think like every 45 days is what it's going to be now. And then we would go in and we would do our. Quarterly visits, like normal with the endocrinologist. And, you know, we have a little team that we meet with, we have our nurse that's part of the trial. We have two doctors that, you know, we see one or one or the other who are in the trial. And then we have our coordinator. Who's amazing. And so we get to see all of them whenever we go in and they do just like you normally would, you know, they talked for sites. Her sights look okay. Discuss any problems. If we have to sign any paperwork, we signed our paperwork. They always get an A1C to see, you know, if it's coming down. Sometimes we aren't told what it is because it's best for Insulet. So, but most of the time, you know, we, we were informed. Sometimes we have to get a blood draw. Other times we have to just do a finger A1C, usually if the finger A1C, but we have had to do a couple of blood draws, which is hard on her because she's only six, but you know, it's we get through it.

Katie:

yeah, we've only had to do one blood draw and it was not pleasant. So I mean, she, she didn't grade and the guy, the guy doing it was like an expert. We like drove all the way across town to go to this one guy that everybody recommended who was great with pediatrics. But yeah. asked immediately, like when do I have to do that again? I'm like, hopefully not for a long time, but maybe once a year, at least

Skiy:

Yeah, we do a yearly. And then I think we've had, I want to say we've had two extra blood draws with a trial.

Katie:

Bless her heart. What, are there any other modes like hypo protect? Like, is it, or is that the only like specialty mode that you can flip on and off?

Skiy:

That's the only one. I want to say that. I mean, that's the only, I'm pretty sure that's the only one. That's the only one that we've we've used and you know, that they've encouraged us to try out. Because, you know, intellect wants to know, obviously, even if it's working well, so they definitely encourage you to try it and use it. It's definitely a great feature. can't think of any others. You know, we don't touch like the basil. We don't touch it at all. If we're in manual, I would assume in manual, you can shut it off. Do do like what you, what you do, where you, you know, you're a little bit more in control, but we don't do any of that. We don't touch any of those features. That would be. She's on a closed loop system. So it just does it on iPhone.

Katie:

Have you noticed that? I mean, with the A1C numbers that you have been given, and I don't need to know what they are, but like have they come down, have you seen an improvement or, or even, not with A1C, but like time and range and just less of a rollercoaster

Skiy:

Yeah. So she's she's in range. When we just went to our appointment last Friday, they said that she's been in reached 78, 70 9% of the time is really great. And you figure some of that range is lower than one 10 where it's not marking her in range because our targets, you know, that the thresholds at the lowest is at one 10. So if we're below that, then it's not considered in range. So from my. Idea of in range. We're probably in range more than 79%. But from their records and what it tracks, we're in range, 79% of the time, like 81% of the time. So they're really, really happy with that. And, you know, they, they tell me you're working really hard. We can see how hard you're working and this last visit, her A1C dropped another half of a percent. So. Like, I don't know, half a number. so it's, continuously come down every time, every time. For the most part, we did have one, one time where it was just, it was, it was steady. But every other time it's come down a couple points or like, like this time it came down, I have a point.

Katie:

Wow. That's awesome. Okay. How long are you in the study for? When is it.

Skiy:

So we signed another extension and this extension is indefinite, which just means it goes until it's released. Because they, they don't know, they don't have a date on that yet. And they don't. What I was told is they don't want to. The people that are participating in it off of, you know, off of it, would they want us to be able to continue to be on it and when it's released to be able to get on it they're not sure how that will be reflected with insurance and whatnot. But we right now, we're just, we're on it until it's released. I, so like the age group, she just moved out to the, to the second age group because of. So, if that is released to before the original age group that we were in, which was five, then, you know, we'll be able to get onto that system. We'll be able to get on it with the six to 12.

Katie:

Yeah. That'll be interesting with insurance. And the only reason I say that is cause you were on the older system before, and we're on the older system now because our insurance will not cover the dash pods as a pharmacy benefit. And that's the only way that they. Offered is through the pharmacy. I've been told, so anyway, so I'm like, my husband actually just wrote a letter to like their benefits person at their corporation about, you know, Hey, what do you, what do we need to do to get this covered as a pharmacy benefit? Cause you know, some big things are coming and we'd like to have access to it. So we'll see, I've got my, all of my fingers and toes crossed on that one. So.

Skiy:

Yeah, I'm I'm a little bit nervous to see what happens with that. I know I just got a letter this year, like a couple months ago saying that we're now approved for the dash system and I'm like, you know, we've been waiting for that. Like dash came out pretty much right when we got on Omnipod. And so I was hoping that we would just get right into that system. And we didn't because it wasn't covered and it took all the way up until, you know, it took two years for us to now be covered. So I guess our fallback, our fallback would be two. Obviously get on the dash system, but I don't, I don't want to, I don't want to do that. I want to stay on this. I might, my fingers crossed that we'll be able to, like, don't we get some help grandfathered in or something, you know,

Katie:

No sky, I cannot say a hundred percent for sure, but let me tell you something. I have talked to a lot of Omnipod reps, not for the podcast, just for like my own personal, like, Hey, my daughter needs this, you know. type of thing. And. They have all said that if you're on the dash system, which we're not, I'm like, well, we need to get there first, but they've all said that if you're on the dash, it's just an

Skiy:

It's.

Katie:

It's just like a software upgrade. So it's, easily moved from one to the next is what I've been told. So, I mean, I know things can change quickly and at the drop of a hat, but I think I I'm feeling good about it for you sky. Okay. So overall you were like really happy with the system. What were kind of your overall thoughts on the whole thing?

Skiy:

Yeah. I mean, I really, really like it a lot. It gives me a lot of peace of mind. Like I said, the nighttime has been huge when I, so my daughter right now, I, I made the choice to homeschool her of sending her to kindergarten. So I'm homeschooling her. But before I started doing that, she was going to preschool. You know, on a part-time basis, a few days, a week, and had been in preschool and then COVID hit and the preschool had closed down. And then, you know, she ended up going back to preschool. between that period of time is when we got in this new. Her preschool teacher was on our old system. And then, you know, we got her into the new system and she was like, wow, this is incredible. You know? So even from like an outsider's perspective, she was like, this is so much easier. You don't only have to carry around one device. You're not carrying around multiple devices. Everything is handled through one system, you know, it's, it's just less things to worry about, less things to lose. I absolutely love I love that it's gotten her A1C to go down, you know? And it's been, her A1C has been stubborn definitely. Before we got on this, it was a little bit more stubborn and harder to get her down. So I I've noticed a huge change with that. I love that the range situation, like I told you, that we can dose her from such a far distance. I mean, I don't, I don't really have anything bad to say about it, to be honest with you. My only, my only recommendations to them if they were to ask and they had asked our opinions, obviously, you know, they, they, they ask our feedback. But my, my feedback to them. It'd be nice if it didn't always have to be on the same plane, just so I gave a little bit more of an option for rotating and the extended bullets is a nice feature to have, but it's, it's something that you can obviously live without, but those are the two, the two like changes I would make otherwise. I think they're on point. They know what they're doing. I've never been on a tube system. I, but if for a tubeless and a loop, all of this, this is, this is the way to go. I mean, I, I.

Katie:

Yeah. We're really, really excited about it. I wanted to ask you just as this kind of random thought that popped in my head, but like, you know, at night, for instance, when my daughter is sleeping, if she's running high, for whatever reason I feel like to get her to come back down, I have to give her more insulin than I normally would if she was up and moving around during the day. And I feel like that's just because she's pretty inactive. So the insulin isn't getting circulated at. Quickly, I guess I'm not sure who really knows the reason, but but I just always feel like if I'm going to give her a correction at night, it has to be more than what I would give her during the day. If I want to actually see it, come down to a, a better range. And that always would make me a little nervous because you're, you know, it's like you want to sleep and you also want your child to be safe while they're sleeping. So I'd always be like second guessing. My decision, even though I knew history tells me all the time that this is what I need to do, but I feel like with an automated system, I would have a lot more peace of mind of being. Maybe a little bit more aggressive with the correction I would give, because I know that I would know that if it was too, maybe a little bit too much, then the system would be adjusting the basal rates for me to keep her from crashing.

Skiy:

That's the same issue we used to have is we would correct. Do a pretty hefty correction, especially because they're sleeping and their activity level. You know that that's not helping out. Cause they're not doing anything they're sleeping us. So we would do a heavy, heavy correction. And then we would have the crash in the middle of the night. And that's where I, I would, that's why when we got on the system and I just started crying cause I'm like, yeah, I really could use some sleep, you know? So I, I really feel like it, it has changed. It's a game changer in terms of that. You know, if we give her a heavier correction. We generally don't have an issue. Don't get me wrong. We still have had nights where we have lows where a Dexcom fails us. And, you know, we have a compression low as well, and it's not a real low. All those, all those same issues obviously still happen as long as you're also along the lines of having to. Fight Lowe's, you know, you have a correct or correct low with some sugar, and then it's a little bit still doesn't come up. So some of the nights are still rough, but for the most part, I don't run into that issue anymore. Like you're saying

Katie:

Okay. Another random thought just popped in my head. What do you guys swim often? We're in Florida. So we're swimming all the time. Do you guys swim much in the summer?

Skiy:

no, but we have gone on vacation with it a few quite quite a bit. And lucky you for being in Florida. But

Katie:

I'm sorry, is it snowing there right now?

Skiy:

not today with luckily it was like 50 degrees today. It's the, I prefer the Florida sun over the Ohio clouds. But yeah, we've gone swimming on it. I mean, we went swimming on the old system. We've gone swimming on the new system. It works the same way where, you know, after like half an hour or so you really need to get out of the water and just kind of. Well, we, I don't know about you, but I know for us, I like to pull her out after like 30 minutes. Just kind of let everything dry out, get good readings on her because her Dexcom loses signal. I mean, I'm sure her pod's fine and is working fine, but I don't, I personally, don't like to have it submerged for, for too long. I don't want the adhesive to come out. I don't want to deal with having to do that. So I really haven't noticed a difference. In terms of that, between the old system and the new system. I, I do lose signal just like you would on your Dax com you know, if she's in the water for a period of time. So I I'd say all of that is the same. I think everything with the Dexcom, Dexcom wise is the face. There's really no change, no yourself, compression, lows. You still have readings that are sometimes just off. You still lose signal? You know, I don't lose signal nearly as much though, as I used to. I can tell you that I don't know what it is, but I, I definitely don't. I don't get those, you know, you're going to have an issue for up to three hour warnings. I don't get those as.

Katie:

Okay. Yeah. So yeah, my thought was, yeah, because we lose signal with the Dexcom all the time in the pool. I just haven't figured that out yet. And I, I really don't know that. There is a way to figure that out. But thought was, you know, now if you're on this automated system and it's relying on the Dexcom to communicate with, if you lose signal on the Dexcom, you kind of lose that whole, I mean, it probably just kicks you back into what manual mode I'm assuming where it just presumes like normal basal rates.

Skiy:

So it doesn't, it doesn't actually change to manual mode, but it will just give her like automatically going to get the Bazell the background diesel whatever it's set up to give. So it'll just continue doing that. It's not going to, you know, shut off and not work, and it's not going to push, push you and manual where you need to. Get yourself back in automated about it. It just, it just does what it's supposed to do. It just doesn't get those readings from the Dexcom. So it can't, they can't get it. It can't amp up the basal or lower than the.

Katie:

Okay. This isn't has nothing to do with the But when I was on your Instagram today, just kind of getting prepared, I was like, oh my gosh, she wrote a type one children's book. I need to ask her about that. It looks Will you tell listeners about your book?

Skiy:

Sure. So I. My book is called a wonderful one as wonderful as one, a wonderful story of type one diabetes becoming victorious. My daughter's name is Vira and we call her V her nickname. And last year, one of my, one of my customers, I manage a a small dog boarding facility and one of my customers who I've known for the last 15 years she hooked me up with this foundation. turn your child with a chronic illness into a superhero. So we had a really fun experience where they gave us, you know, they gave us an interview. They asked my daughter a bunch of questions about what her superhero would be, you know, what would she look like? Would she take, you know, all of my daughter's favorite things. And then they paired up with an artist who drew it up. Rendering of what my daughter said. So my daughter called herself, you know, we came up with V victorious as her superhero name. So she's V victorious and she fights professor pancreas. He is evil villain that gives children type one diabetes. And we kind of, we kind of came up with all this together and then my daughter came up with her. Her sidekick is a unicorn and her name is wonderful. So the one, you know, wonderful. I, and her and wonderful, you know, my daughter is so funny. She'll tell me all these made up stories about her and wonderful fighting professor pancreas. And you know, she's such, such an Amanda, my imaginative kid Then that, that foundation actually gave my daughter's information to another foundation called the songs of love and they created a song for her, which was so cool. We got a little in the mail that had a, in a link email to me with a song and it's just for my daughter. And it's. About her superhero and about all the things that she loves, then, you know, they referenced the victorious professor pancreas. And so in my house, you know, my daughter is sometimes as victorious. And so I, when I, when she was diagnosed you know, she was really little and we loved reading stories to her. And I really wanted to try and find stories that could

Katie:

Yeah.

Skiy:

diet type one diabetes. know, we got the Rufus book and. We got Hank, the cranky pancreas. And I forget there's one other one that was given to us. But if you look, it's really hard to find books, especially ones for like younger children that are, you know, you want it to be kind of fun for them. You know, cause I wanted her to, to be able to relate to her diabetes in like more of a fun way, which is really hard. And also just be able to relate that other children have type one diabetes, especially because you, you don't just go out into the world after diagnosis and, you know, meet a bunch of other type one kids, you know, you have to go out and actually try to find type one kids. So I really wanted to find books for her and it was really, it was challenge. So I thought it'd be really fun to write our own story about victorious. And I just. Wrote it and illustrated it. And self-published it on Amazon? This, this well last week. And it was week, it's when it became available to order. And I just received my copy yesterday and I was so happy with how. They actually wrote another one that is in review that should be available on Amazon as well, within a day or two, it's called the girl who chases unicorns. And it's, they're both for my daughter. You know, so cool seeing her yesterday, know, her book came and I read it to her and. She like a couple hours, right before bedtime, she just was playing her victorious and doing all of her fun, victorious things. And her, her little brother who's months old, you know, she like, it's so funny because he was born and right away. She'd like he, his name is Zale Amanda, his name's

Katie:

Okay.

Skiy:

So she's calling him salamander and he's, he's another sidekick of the victorious and wonderful. It's just the whole thing in our house. So I just want it to be able to give that, to kind of give that back to the community and you know, hope that other little kids could hopefully find it and read it. And talks about how my daughter turned her diabetes into realizing that she, it was turning her into a superhero. So I just want other little kids to not be as afraid and to be able to be empowered and like a superhero.

Katie:

Yeah. no, I think that's such a great message to send out for it, to be it, to be fun, you know, for it to be teaching kids about type one, but in a, in a fun way where they maybe don't even realize they're learning about it, you know, and they're just seeing other kids have fun with it. I. I wait, the perf is evil Professor pancreas in the book because that's the character that I have envisioned in my hand right now.

Skiy:

Yeah.

Katie:

Or was he just,

Skiy:

races in there. Yep.

Katie:

okay. Okay. I'm going to have to, I love that you illustrated it yourself too. Yeah, I looked, I was, I was like zooming in, cause I I was just curious to know who did the illustrations? Cause the cover looked really beautiful and I'm like, oh my gosh, she illustrated this thing to.

Skiy:

I did not draw the illustrations. I didn't use a program of a variety of different non-compete copyrighted material

Katie:

Yeah.

Skiy:

made my own, my own pictures with them. I, all of it is. Royalty free And I, and I piece things together and, you know, just trying to figure out how, how it would fit for me, because I can't, am not, I cannot draw, but I think I did a really good job of piecing everything together. And I really did work hard on it to make it look, make it look good and, you know, to feel like it fit my daughter and her personality and the things that she, she feels victorious has.

Katie:

Absolutely. Well, I will definitely put a link to that in the show notes so people can, can find it. And I have a running list of, of a type one children's books to one day. I'll put it all into a blog post, but I'll definitely include yours in there. And then your Instagram handle, you, you know, you kind of do a little awareness and advocacy on Instagram. Tell everybody what your Instagram handle is so they can come and find you and follow you.

Skiy:

So it's at our wonderful life. But it's O N E D E R F U L instead of just, you know, cause it's a plan, it's a plan type one. So our wonderful life,

Katie:

Okay, great. I'll put a link to that in the show notes too. sky, thank you so much for coming on. I just was thrilled to talk to you today just to meet you and learn more about you guys, but to hear more about this Omnipod trial too. And I know everybody's just, you know, it's been, they've been saying it's coming out now for a while, so we're, we're all getting very excited. Cause I feel like it's just, it really is coming out soon. I am hopeful.

Skiy:

I really think it is. Haven't told us a release date. I don't think they know a release date, but I know that they are submitting everything. I know that they are, this is really important to insulin. Obviously considering they want, they want all of us to be able to continue to be on the system. So I know that they have. All of best interest in mind. I think that they have all of their, all of their customers, all of their diabetes,

Katie:

here.

Skiy:

patients, best interest in mind. And I really think, like, I feel like year's the year, like 20, 22

Katie:

Mike.

Skiy:

year that's, that's what I'm hoping for. And I know everybody's probably hoping for that.

Katie:

Yeah. In Dexcom G seven will probably come out soon, too. However, I feel like that's going to be a while before integrates with the whole automated system with I, you know, I don't think that's going to be like automatic or anything. Like it comes out and all of a sudden it's integrated with the Omnipod five. I think that'll be a while, but honestly I really love my G six, so, or my daughter she's six and I'm perfectly fine living with that. Oh a while. All right. Well, thank you so much. Thank you for coming on. Thanks for your time. Great chatting with you. You're very welcome. You have a good night. All right, everybody. That is it for our show today. And we have a super quick outro as it is early in the morning here. And I am the only one in the family who is awake. So I'm trying to be quiet so I can get some extra alone time before the day gets. Remember, you can find sky on Instagram at our wonderful life. I will link to that in the show notes, along with her two books, I will link to those on Amazon where you can find them a wonderful story of type one diabetes becoming victorious and her new book, which just came out last week. The girl who chases unicorns. All right, you guys have a fabulous week chat with you soon. Bye.