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Episode 51- Diagnosed as a baby, turned CDCES, then T1D mom?!
228 Plays4 months ago
Join us as we chat with Cayley about her type 1 diabetes journey! Cayley is a CDCES that works with us at Type One Together. She was diagnosed as a baby and then pursued a nursing career and got her CDCES. Her son was then diagnosed with type 1 as well at just 2 years old. Tune in to hear Cayley's story!
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Transcript
Introduction to 108 Podcast
00:00:00
amanda
Hello and welcome to the 108 podcast. I'm Amanda and we're the type one together girls.
00:00:03
amandacberg
And I'm Raquel. We are stripping down life with type 1 diabetes from two people who have different versions of it every single day. Please remember type 1 together does not give medical advice. We are only sharing from personal experience. And I do want to disclose I'm in a current contracted position with tandem.
Special Guest: Cayley- Her Diagnosis Story
00:00:21
amanda
Okay, you guys today we have a very, very special guest. As many of you know, we do have a couple of CDC ES's who work with type one together in various capacities. And so today we have Kaylee with us. Hi, Kaylee.
00:00:36
amandacberg
Welcome.
00:00:36
amanda
We're so excited to have you on today. Let's dive in to your story because it's a fascinating one. So will you please share about your diagnosis because Kaylee also lives with type 1 diabetes.
00:00:39
Cayley Gover
Thank you.
00:00:52
Cayley Gover
I do, yes. So I was diagnosed back in 93 when I was 10 months old. At that time, I was one of the youngest. That has definitely changed. There are much, much younger kiddos being diagnosed now. But at the time, honestly, my mom just brought me in for a wellness exam. You know how the doctor walks in, or they should walk in and wash their hands?
00:01:17
Cayley Gover
This sound, apparently I was sitting on my mom's lap. The sound of him turning on the water made me just go crazy because I was so thirsty. You're 10 months old, so you're crying, you're thrashing around. I was so thirsty. And the doctor actually was just like, that is a very strange response. Kids don't normally do that. And he caught it. That's how he caught it. So he had my mom put, you know, back then, I don't know exactly what it was, but he was checking for ketones.
00:01:41
amandacberg
Whoa.
00:01:47
Cayley Gover
So he had her put something in my diaper.
00:01:49
amanda
Thank you.
00:01:50
Cayley Gover
probably some sort of ketone strip that they had back in the 90s. And then she brought it back the next day. He went to the lab or whatever, the office for a couple of minutes, came back in and gave her the diagnosis. And that was all it took.
00:02:03
amanda
Oh my gosh, I didn't realize that that was how it went down.
00:02:08
Cayley Gover
Yep. He was like, Not that they're like, for lack of a better term, run of the mill, just like general Peds doctor. He was not in endocrinology. He was just a family doctor. Um, so it was actually pretty incredible that he thought diabetes, because, you know, kids go in all the time with like these major symptoms and a lot of doctors misdiagnose.
00:02:28
amanda
Yeah.
00:02:31
Cayley Gover
And so it was actually pretty incredible that he was able to catch it and, um, Yeah, then our life.
00:02:38
amanda
So was that his, that I know.
00:02:38
amandacberg
Wow.
00:02:40
amanda
Yeah. And then your guys's
Challenges During Kaylee's Childhood
00:02:42
amanda
life changed forever. Um, was that his first thought? Like, do you know if that was his first thought as soon as he heard you cry and react like that? He was like, I wonder if she's thirsty and has diabetes.
00:02:54
Cayley Gover
That's what I was told. That's the story that I was told growing up.
00:02:58
Cayley Gover
I guess I never really picked apart the specifics of it, but my mom loved him. She was always indebted to him because it was just amazing that he caught it. I'm sure there were other things going through his head at the time, but for him to be like, okay, now we're going to take action on this thought and we're going to actually check for diabetes, actually check for ketones is pretty rare.
00:03:08
amanda
Wow. Yeah.
00:03:22
amandacberg
That's how it should be.
00:03:23
amanda
very. It's how it should be but yes it is very rare.
00:03:27
Cayley Gover
And that same doctor then, because we were in the clinic, so then we went to the hospital, obviously, and they did the whole spectrum that they do. But I remember my mom always telling me that that physician stayed in the hospital room with her till like three in the morning in a rocking chair, just like talking through, because he didn't really know what to do either.
00:03:51
Cayley Gover
That was so young and he was not experienced with diabetes, so they really had to figure it out together. Can you imagine a doctor, physician, hanging out with you until three in the morning in your hospital room, talking to you about the future and all the...
00:04:04
amanda
No.
00:04:06
Cayley Gover
That's the way, like you said, that's the way it should be. Unfortunately, that's not the healthcare system that we have, but
00:04:12
Cayley Gover
She was very lucky to have him.
00:04:13
amanda
Yeah.
00:04:14
amandacberg
Yeah.
00:04:25
Cayley Gover
I don't think so. I know that I wasn't sick. I know that I wasn't losing any weight yet. I didn't really start showing major symptoms until after the diagnosis. Like I remember seeing pictures of me after I was diagnosed and I looked kind of sickly, but they didn't catch on to that beforehand. So, you know, who knows I was, I'm the youngest of three girls. Um, you know, my mom had a, she had a law on her plate at the time. So maybe there were things that, you know, were kind of obvious looking back, but she didn't, you know, she didn't know what she didn't know. We had never, she had never heard of diabetes before.
00:05:04
Cayley Gover
So, um, yeah, pretty wild.
00:05:05
amanda
Yeah.
00:05:08
amanda
Well, and with, sorry, go ahead, Raquel.
00:05:10
amandacberg
No, no, no.
00:05:11
amandacberg
Mine's on a different subject. Go ahead.
00:05:13
amanda
I was just going to say that like with kids, especially the super young kids, they they're fine until they're not. So like, you know, the true signs and symptoms kind of rear their ugly head right as they are going into true decay. So it's it can be a matter of hours before it's like, oh, they're kind of OK and they're really not OK. So that makes sense.
00:05:37
amandacberg
I was just going to ask about what management was like then.
Mental Health and Diabetes
00:05:40
amandacberg
I don't know if I've ever told you this, Amanda, but our meters that we used to use when I was first diagnosed, it would count down from 20. And that was like a big change. Now it's five seconds, right? Or we just have our CGM. I remember having to sit there for 20 seconds waiting for it, but that's probably nothing compared to, you know, even years before that. So like, how has your management evolved? I know now you've been on so many different pump systems, so kind of take us through that.
00:06:02
Cayley Gover
I mean, back then, you know, the needles, you know, they didn't have you didn't have pumps. So the syringes were super long. I remember they were very long. So now you have the tiny little syringes for injections, which is great. Back then, they were terrifying. And I remember my mom and dad would, and this still happens for young kids, but my dad would have to hold me down on the bed, which sounds awful, but it's like,
00:06:31
Cayley Gover
you have this screaming wiggly baby who doesn't know what's going on. You can't explain it to them. So he would have to hold me down while my mom actually gave me the injection on the bed. And those suckers were long. I do remember that. So they did injections and then I did that all the way up until I turned 10. So around my 10th birthday, I started my first pump and it was a Medtronic. Um, And that was kind of like a, kind of a rough intro because, you know, you get your pump education and like, that's what I do as a career now, but you, you have your pump education, but at that age, all the education is for the parent, right? Like they're not really gearing anything toward the actual person, the child with diabetes. So everything was taught to them. And I was kind of like just this bystander, you know, starting this,
00:07:25
Cayley Gover
new device. So I actually had a very life-threatening episode of DKA shortly after I started the pump because I didn't know how to troubleshoot. I ended up having a kinked cannula and had to be life-flighted off of this island on a helicopter to the children's hospital. And it was a little traumatic. It was a very rough introduction to pump therapy.
00:07:50
Cayley Gover
Um, but so I was on Medtronic for a very long time and you know, occasionally I'd take pump breaks.
00:07:57
Cayley Gover
And then once I was, I really was on Medtronic until I entered adulthood. And I think at some point in my twenties, um, I did Omnipod briefly and then I I switched to T-Slim and that's kind of what I've been on ever since for like the last -ish years.
00:08:13
amanda
Oh my god.
00:08:49
amandacberg
So cool.
00:08:50
amanda
Yeah, that is so cool. It's interesting. I sort of wish that, well, no, that's the wrong way to phrase it. I continuously offer Hattie all of her options. And she is very focused on Omnipod because it's safe, it's comfortable, it works, she knows what to expect. But there are some times where I'm like, it would be so nice to just like go and pick you know like let's do the mobi today let's just see yeah yeah exactly exactly um okay wow that's crazy and fascinating and so scary can we go into mental health for a hot minute like
00:09:19
Cayley Gover
Like an accessory.
00:09:22
amandacberg
Yes.
00:09:28
Cayley Gover
Yeah.
00:09:32
amanda
The fact that you, one, don't know life without diabetes, but two, you only know life with like of these really scary and sad and challenging memories. like you know the you can explain these memories about like a long painful needle and you know the constant finger pricks and then like the whole decay episode. What do you do for your mental health and like how is your mental health currently?
00:10:00
Cayley Gover
Um, I mean, I, so
Being a Mother with Diabetes
00:10:04
Cayley Gover
I come from a faith-based family. So that plays into it a lot. Um, but I, you know, most of my time is spent with my son. So there's just a lot of like, he is kind of what keeps me going. And I feel like I have to be an example for him now because now that he's diagnosed, you know, I don't, I still have my moments, but I'm able to better cope with them now. I for sure had diabetes burnout when I was a teenager. I struggled with that for a very long time. My control was not good when I was in high school.
00:10:39
Cayley Gover
Um, and like even as a preteen, I basically wanted nothing to do with it and it showed, uh, I didn't check that was even before CGM's too. So I didn't, wasn't testing, wasn't really dosing. I, and I think I've shared this on, uh, the app before, but I struggled with eating disorder when I first started high school, which. basically stemmed, I think, from diabetes and was able to work through that. Thankfully, it didn't actually stick with me very long. It was probably about a year or two. A lot of people struggle a lot longer than that, so I was grateful in that sense to kind of have my moment for a couple years and then kind of press forward.
00:11:25
Cayley Gover
I, you know, I just, I have to keep going. I've got my kids now and it's like you have to just keep going. There's really not other, not another option. Um, but I'll be honest, you know, I'm a mom. I don't have a lot of time to myself. So there's not a lot of opportunity for me to just Like we have zero childcare. So, you know, when you don't have childcare, you have a kid who's technically not, I don't like saying special needs, he does. He does have special needs and you have to be trained appropriately for that. We just don't have where we currently are. We don't have people who feel equipped to kind of step up to the plate. They're very nervous, which,
00:12:10
Cayley Gover
is completely understandable. I remember when I was a kid, that was my mom's biggest thing was finding friends of mine who had parents who were willing to take on that responsibility. That was like the biggest struggle for her. And now it's kind of playing out in the same way for me as a mom. Just finding people who are, they're willing to be trained, but they're still very cautious and they're scared. They don't want something to go wrong and so it's just easier to not really offer. So there's not a lot of time for self self self-help and mental health and
00:12:50
Cayley Gover
It's just, you gotta keep going. You do what you can. I take my little breaks. You know, I get out. Right now, the luxury is getting out in the car independently and like grabbing a coffee and just driving sometimes or running errands by yourself.
00:13:00
amanda
-hmm.
00:13:07
Cayley Gover
That's basically what it is. But, and I think you guys know this, we're about to move. So there's just a lot going on right now and we have Plans to really get involved in the diabetes community once we're in that area when we've moved to our new house. And I think that is one of the biggest things for me is just plugging into the community with people who understand.
00:13:29
Cayley Gover
And like, don't judge you for the, you know, the helicoptering or the craziness or, you know, just the things that you have to do as a parent. I think it's easier to kind of
00:13:41
Cayley Gover
Focus on your mental health when you have other people around you who need to do the same thing and who understand So that's kind of where we're at
00:13:48
amanda
Did you have? Yeah, no, I hear that, I hear that.
00:13:53
amandacberg
Thank
00:13:53
amanda
the going to the in the car for a cup of coffee like my my break yes my me time last night was hey if you do bedtime can I fold the laundry silently yeah totally like such a dream so I get that but what about like when you were growing up did you have community did you have friends that lived with type one and
00:13:56
amandacberg
you.
00:14:19
amanda
I'm thinking more like high school as you're explaining everything after you were 10, 11, 12 or whatever. Did you get to see anyone, talk to anyone, work through heartache and the hardships at that point?
00:14:23
Cayley Gover
Yeah.
00:14:29
Cayley Gover
So I never saw it like meant like a mental health professional was not a thing in in the health care system, at least where I was in Seattle, which now it's very different. But as a, you know, preteen young adult, they didn't have social workers or psychologists or whatever who would come into your clinic visits. Where I worked as an educator, we had somebody on staff who was, they saw anybody, but they also had kind of just experience with diabetic children. And so you could call them if you felt like a family needed some extra support in that area. That was not a thing for me when I was a kid.
00:15:13
Cayley Gover
offer it, it wasn't something that we knew knew to seek
Becoming a Diabetes Educator
00:15:17
Cayley Gover
out. I think mental health is much different today, especially for the youth than it was back in the early I went to diabetes camp. I loved it. I'm a huge supporter of diabetes camps. I went to Camp Leo in Washington every year until I was too old to go.
00:15:35
Cayley Gover
And I made some really good friends at camp. One of the girls I'm still friends with, I'm friends with her mom. She came to my wedding. So I had ties that way, but she didn't live near me. So, you know, and that was before texting and like social media and stuff. So there were, you know, occasional phone calls and occasionally we'd, you know, get together, but that was very seldom. So it was typically once a year you're looking forward to, you know, seeing like your best diabetic friend. And we did, I mean, we had such a good time at camp, but it's for a week, right? And then you go home. And so where I lived, I didn't have anybody in my high school.
00:16:17
Cayley Gover
who also had type one that I actually or like socialized with. So it was, you know, it was just sort of like that until social media became a thing. And then once that happened, then there was a lot more like branching out and trying to find other people my age who knew what I was going through. And we did JDRF walks every year too.
00:16:37
amandacberg
So yeah. At what point did you decide you wanted to become a diabetes educator? And was that partially because you were looking for more community and support and like to get back in some way? Like, how did you come out of that intense burnout? I know that's a lot of questions in one, but I'm wondering if they're all kind of interconnected.
00:16:54
Cayley Gover
I think to some extent, you know, I think everything kind of happens for a reason and you know, you are who you are because of your experience. And I went to college not really know, I think I started wanting to do social work and my focus actually at that time was more like foster care kids and like CPS cases, like that was kind of what I was interested in so it had nothing to do with diabetes.
00:17:20
Cayley Gover
And then quickly realized my freshman year, that was not really what I was made for. And so then I was thinking like psychology. And I remember having a conversation with my dad and it was, you know, one of those moments, like dad's trying to kind of bring you down to earth and like talk practical, like, okay. like financially, you know, just all those things like, are you sure this is what you want to do? And he it was his actual recommendation to pursue nursing because he, you know, thought I've just I'm a person when I was a kid, like trying to help and take care of people and clearly had a very like medical focused, you know, grow up.
00:18:03
Cayley Gover
and my childhood was very much revolved around healthcare. And so he kind of put that thought in my head and I thought about it and thought about it and I finally changed my major. So I did pursue nursing and then right out of the gate, I got a job with orthopedic trauma. It was just like, you take what you get, right? As a nurse, as a new grad, You just go wherever somebody will take you because you have no experience. So I did orthodrama and after a year I already felt burnt out. I just, I was like, I don't know if I can do this for the rest of my life. So I really started thinking about what I wanted to do and
00:18:46
Cayley Gover
I don't remember exactly why I started researching, but I started looking into how to get involved in the world of diabetes. And I realized that at the time I was in North Dallas and I realized that there were two pediatric endo clinics there, which I didn't know when I moved there. And so I thought, oh my gosh, like that's, that's what I want to do. I would love to do that. So I started researching it. I had no idea how to like get into the world of becoming an educator. I knew I wasn't going to be a doctor. I didn't really know how I could get involved as a nurse. So I started doing research. I reached out to, I don't remember, apparently I was doing some internet sleuthing. I don't remember how I got her name or her contact.
00:19:33
Cayley Gover
But I reached out to her name was Karen and she worked in Dallas as an educator at the pediatric endo hospital. And I think I was just trying to get my foot in the door and like get a contact and. I knew that I wanted to find a different job. And then I think on maybe Indeed or something, I got a notification that there was a job opening at Children's in Dallas, in North Dallas.
00:20:00
amandacberg
Fun fact, that's where I was diagnosed.
00:20:03
amanda
So random.
00:20:03
amandacberg
So crazy.
00:20:04
Cayley Gover
Yeah. And so I, it was almost like, I can't believe this is actually happening. Like this is exactly what I can see myself doing. I would love to do this. And. It's a great hospital like it's really close to me so I applied. I got an interview and then I didn't hear anything. It was like almost Christmas and you know a lot of companies they're not hiring right before the holidays but it was Silent it was silent. There was nothing from them for like two weeks. So I thought why didn't get it and you know, I kept working and Then I think I randomly got another call and they wanted me to come into like job shadow To see if it's actually what I wanted to do because I was young I had no experience, you know, I had personal experience but I had not been in the workforce long I
Professional Certification and Parenting Concerns
00:21:14
Cayley Gover
These are
00:21:14
amanda
Okay.
00:21:15
amanda
And then you had to, so did you end up taking the exam to become a CDCS after you, you have to like meet 1000 clinical hours, right? Or something like that.
00:21:24
Cayley Gover
Yeah, so with children's in Dallas and a lot of places, you don't have to have your CDC ES to be hired there. So I worked as a diabetes educator and I did all the things, but I had to have the 1000 hours before I could sit for the exam and not everything counts for those hours. So it's, you know, there's, different things that you have to do. And so it took a while. And then got pregnant and I knew that I wanted to take my exam before the baby came because once the baby comes,
00:21:58
Cayley Gover
All bets are off, I knew that I wouldn't be able to study. So I was studying throughout the pregnancy, and then I took my exam, I'm like eight and a half months pregnant, and fortunately passed. So I got my official CDCES in 2021, and then my son was born a month later, and I worked for a little bit longer, and then I quit my job because we were moving. Um, I still, I still have my license.
00:22:25
Cayley Gover
I still maintain it. Uh, but looking back, I'm like, how did I pass at eight and a half months pregnant?
00:23:09
Cayley Gover
You know what you're doing, but do you really know what you're doing? So they really encourage you and most places, if you're gonna work there, there's a requirement that within X amount of years, you have to have that or else you can't continue working here.
00:23:13
amanda
Mm-hmm.
00:23:24
Cayley Gover
So I got pretty close to that cutoff before I actually took my exam.
00:23:29
amandacberg
so okay there's definitely more we could dive into there but i want to make sure we get to your son who now lives with type 1 and I'm going to ask this, but no pressure at all to answer. It's just kind of a personal thing. Very curious if you were concerned before having kids that they were going to get type 1, how much you thought through that, because that's something that I think about all the time, right? And I will still have kids. I think the technology is getting better and better. I know that I love life, even with diabetes.
00:23:56
amandacberg
I don't think it's a reason to not, but being someone that has not lived through, having it yourself, knowing what it's like, having kids and then having the diagnosis, how has that been?
00:24:05
Cayley Gover
That's a good question. I don't think it was never something that
00:24:10
Cayley Gover
made me question whether I wanted to have kids. I've always known that it could happen. In my family, I was the only person. Nobody else on either side of the family, just me.
00:24:20
amandacberg
Hmm.
00:24:22
Cayley Gover
And, you know, technically speaking, the chances of your child having diabetes are higher if it's dad who is diabetic,
00:24:31
amandacberg
Right.
00:24:31
Cayley Gover
So I knew that there was like a little bit of an increase from the general population, but also you're seeing like this rise in type one diabetes across the age spectrum, like no matter what. So the risk for the general population is increasing. So I knew it was there. Um, it was not something that scared us from having kids and And I've shared this too on the Honey Health app, but my mentor, when I started at Children's, she was also type one and I think her brother was type one, but her parents had taken out a life insurance policy for her when she was born because they wanted to make sure that if she was diagnosed,
00:25:18
Cayley Gover
she could still provide for her family as an adult if the need arose. So she, I remember her telling me like, you should do this when you start having kids. And I put it on my, you know, mental checklist of things that I wanted to make sure I did. And I talked to my husband. We decided we wanted to do that. And then, you know, you have your kid and life happens and you just don't think that anything's going to happen cause he's healthy. Like he seems totally fine. There are no signs or symptoms and you know,
00:25:52
Cayley Gover
And Amanda, you know this. There's always a phase that you're in. It's like you're teething, or they're starting solids, or you're potty training. There's all these things, and life just happens. You're in one thing that's hard, and then you move on to the next. And so it's like time just sort of got away from us. We meant to get a policy for him, and we never did.
Gabriel's Diagnosis Journey
00:26:17
Cayley Gover
And then he was diagnosed, and it was like, You know, because he's, he's a boy, like eventually probably who knows, but he may get married in the future and he may have family.
00:26:21
amandacberg
you
00:26:28
Cayley Gover
And so we really wanted to kind of set him up for.
00:26:32
Cayley Gover
typically men are seen as you know the provider and so we really wanted to be able to help him in that way and we didn't take the initiative. So we tried the week that he was diagnosed and we got declined. Um, so that has been kind of a struggle. So with this next one, it's on the top of the list because this next kiddo could get diagnosed. You never know. So this time we're like, okay, we have to do this. Um, cause I am having a boy.
00:27:00
Cayley Gover
So, but regardless, even if we were having a girl, we would still do it. So that's kind of on our checklist of things to do, but, yeah, he's.
00:27:07
amandacberg
Thank
00:27:09
Cayley Gover
almost he'll be three on Friday and he was diagnosed last August.
00:27:12
amandacberg
you.
00:27:13
Cayley Gover
So his first diversity is also coming up pretty soon.
00:27:14
amandacberg
Mm.
00:27:19
amanda
When can you go into his diagnosis a little bit and like what exactly
00:27:27
amanda
what what signs and symptoms were was he showing and like at what point did you basically I want to know if like because I think that my second if she ever started to show signs and symptoms there's a huge chance I'd be like nope nope nope like in full denial like this is anything but type 1 diabetes so I'm curious if that went through your head or if you picked it up immediately got him checked out right away like how did it all play out
00:27:52
Cayley Gover
Yeah, we we were actually you know, it's it's like you hear you basically hear the same reiteration of a diagnosis story because it's like the symptoms are so general and so common amongst kids that you know, I he has basically the same story as a million other children, but We were vacationing in Boise and it was in the summer. So it was hot. It was like 90, 95.
00:28:21
Cayley Gover
We have, you know, all of our time was spent at the parks. We were outside all the time. You know, he's like getting a little tan. He's getting sunburn. So naturally he drinks, right?
00:28:32
Cayley Gover
He's thirsty. He drinks more. Then you pee more. So like the normal increased thirst, increased urination. but it could have totally been just because of the weather and the activity. So for him, he had been, we started potty training him kind of early. So at that point when we went on our trip, he was potty trained, like, except for nighttime, daytime, he was dry. He didn't have accidents at nap time. He didn't wear a diaper during the day or during naps. He was good. So the week we were there, he was,
00:29:04
Cayley Gover
drinking more and peeing more, but I thought it was totally normal. And then towards the end of the trip, he started having accidents during his nap, which was the first thing that I was like, okay, you know, not a red flag, like my brain did not go, oh, he has diabetes. But it was like, all right, this is unusual for him, but XYZ, right? And so then we drove home, it's seven hour drive, And he had an accident in his car seat, which he had never done before. He slept through it completely. Like for a while, he had no idea that he had just completely saturated his car seat. So that was the next thing that just kind of, I tucked away in the back of my head like, all right, a little bit strange, but you know, could be explained. He's exhausted. It's hot. He's drinking a lot. We were home for two or three days.
00:29:54
Cayley Gover
And the day that I brought him in, he, there were two things that were like, okay, Spidey senses are up. This is not normal. But he, we were getting ready for bedtime and he came over to me and he stuck out his little bottle and said, water. And that was weird for him.
00:30:08
amanda
Mm.
00:30:12
Cayley Gover
He. Never specifically requested water. It was always more or Milk or chocolate milk. It was he never asked for water. So that was the first thing that was like That's weird. He doesn't do that. So I got him more water Doing his bedtime routine. He goes and he sits on his potty. He goes potty And then normally you think, okay, he's done. Except he wasn't. He went back to the potty. Like he pulled up his pants, he did the thing. And then he went back to the potty like four or five additional times after that initial potty. And it wasn't a dribble. It was like full on, he's peeing. He has to pee again. Like this is very weird. So that was what was like, okay,
00:30:54
Cayley Gover
If he goes and he sits on that potty one more time and he pees, I'm taking that, you know, cause the training toilets are like portable. So I took it into the bathroom and I said to told myself, if he does it one more time, I'm going to take out my ketone strips and I'm going to check. So I did. And it started changing color. And I knew that was the first thing I knew because he had eaten recently. They weren't starvation ketones. It wasn't first thing in the morning. It was, you know, the last thing at night. So I knew that the color changing and you kind of think, well, maybe the test strips are expired. Maybe it's not, maybe it's not. But when I saw that change, I thought, okay, so now I need to poke a finger and see what his blood sugar is. So my husband had taken him into his crib and was getting him down and I marched in there and I'm like, Weston,
00:31:44
Cayley Gover
We need to a finger poke. So, you know, my husband doesn't know what's going on. He's oblivious. He has no idea what I'm thinking. And Gabe stands up from his crib and he was such a trooper. Like he just held out his finger. I was like, you know, I explained what I was going to do. He's 26 26 months at this point. So he had just turned two. He sticks out his little finger, doesn't cry. Like he's total trooper. And, um, I walked out and I waited for it to count down and it was 5.55 and that was when I had, it still makes me emotional, when I had my little drop, you know, drop to your knees moment and I just knew.
00:32:23
Cayley Gover
And did you guys ever watch That's So Raven on Disney Channel as a kid?
00:32:28
amanda
Yes.
00:32:28
amandacberg
Yeah.
00:32:31
amanda
Yep.
00:32:39
amandacberg
Yeah.
00:32:51
Cayley Gover
When you start with diabetes as such a young child, like seeing, it was like, I saw the whole lifespan of him just like flash before my eyes of like, Oh my gosh, this means just, just like everything that diabetes entails for a little one and like.
Parenting a Child with Type 1 Diabetes
00:33:10
Cayley Gover
preschool age and then you know pre-teen and teenager and Diabetes burnout and like just it was like it all flashed So I had my moment and then I walked back into the room and my husband knew something was wrong and so then he kind of starts freaking out and Gabe is kind of like what's going on, you know, he's kind of picking up on it
00:33:31
Cayley Gover
And at that point I'm like panicking because it's, I think it was almost midnight. Don't ask me why my child, my two year old was still waiting that time.
00:33:36
amanda
Hehehehe.
00:33:40
Cayley Gover
But I didn't know where to go because we live in a rural area. I'm not familiar with the hospitals, like the pediatric hospitals here. And at that point I was like, okay, if I was still in Dallas, I would have known exactly where to take him. I would have had my colleagues there. We were like out in the middle of nowhere. We don't know anybody. We don't know any of the doctors. And I had no idea where to take him. So that's when my mind started going like crap. Like what now I feel like I don't know what to do. And I called my cousin because he's an NP in
00:34:11
Cayley Gover
Portland, and he said, take him to OHSU. I'm going to call ahead. He actually worked for the Endo department. He said, I'll call ahead. Let them know you're coming. And then at that point, it's like throwing things into a bag. I don't know how long we're going to be there. My husband's freaking out at this point. He doesn't know. He could tell. He knew because he could see me spiraling. And so he knew something was wrong. So then he was sort of like, oh my gosh. It's a 45 minute drive to the hospital. And yeah, we got there and Gabe was such a trooper. He did not cry. They started the IV. They did all of the blood work. And he was just like hanging out. I think he watched Paw Patrol. Like that's what he remembers from his diagnosis is watching Paw Patrol. If you ask him about it, that's what he tells you.
00:34:59
Cayley Gover
Uh, so they moved us up to the floor and we, you know, even with my experience, we, and like personal and professional, we still had the two day stay and the education that comes with it. Um, and yeah, it was, it was very surreal. It, cause it's weird, you know, it's like, this is what my parents did. And now this is what I'm doing with my child and.
00:35:18
amandacberg
Mmhmm.
00:35:24
Cayley Gover
You know, you just start to think about like what their experience must have been like and forgave it was so different because we got Dexcom on him pretty shortly after his diagnosis. You know, and they're so much better equipped now, but it was rough. He kept going low before we were discharged. And so then it started us on this like advocacy journey for diluted insulin and yeah was rough but my husband needed the education because he you know he's always been on the sidelines I took care of myself he never needed to do anything and now it was like well you're a front and center now now you also got to learn because I can't be the only one I know what I'm doing I know how to take care of him
00:35:50
amandacberg
Mm.
00:35:56
amanda
Mmhmm.
00:36:07
Cayley Gover
But now it's a team. And so he, we stayed for the two days. They wanted us to, but it was also like, husband needs this. He's got to learn all the things.
00:36:17
amandacberg
Thank you for sharing all of that.
00:36:19
amandacberg
Like I can't even imagine being in that position and who knows if I will be one day and it must have been so interesting like knowing everything ahead of you like that's the difference right from like type one parent who has no idea what's what's about to happen not that that's better or worse it's just so different.
00:36:26
Cayley Gover
Yeah.
00:36:33
Cayley Gover
No.
00:36:34
amanda
Just different, yeah.
00:36:36
amandacberg
that must have been insane. And because we don't have a lot of time, I'm just really curious. I always know and try to acknowledge that I do not know what it's like to be a type one parent. I only know what it's like to live with it, right? And Amanda only knows the other side of it. So I'm very curious as someone who now has done both, like, what are the major differences? What's really hard about being a type one parent versus a type one yourself, I guess, if that makes sense?
00:36:57
Cayley Gover
Ugh. Yeah, um...
00:37:00
Cayley Gover
I would say the difference in response to insulin and low blood sugar treatment, it's weird.
00:37:03
amandacberg
Hmm.
00:37:09
Cayley Gover
I know what works for me to bring up a low, but with Gabe, especially in the beginning, because his pancreas was still functioning to some extent. So I remember in the very beginning, he would go to bed high, and then his pancreas would kick in and bring him just, it would tank. So he was on like no Lantis at some point. I think we stopped the Lantis because his pancreas was kicking in and bringing him so low, but then you couldn't even really treat him with very much because even like two fruit snacks then send him back up, but then his pancreas would kick in again. So it was like,
00:37:49
Cayley Gover
It was so, it was so weird because it's like, well, mine doesn't, you know, my body doesn't do that. Um, so I guess the response to different things is challenging because you think, you know, like you see it from your perspective and sort of expectation of, well, well, this will probably happen. Cause in the past, I know from XYZ, that's my experience. So it's learning to. learn diabetes again and it completely from it from a different perspective um and then oh yeah and that was the other hard thing he's just now
00:38:17
amandacberg
Yeah.
00:38:22
amanda
and guessing what someone else's body is going to do. Like in someone else's body who like can't always verbalize what they're feeling.
00:38:32
Cayley Gover
catching on to, he'll come up and say, mommy, I need a juice. It just happened the other day. And I looked at his sugar pixel and was like, you don't need juice because he's in that point, you know, he's three. So I need fruit snacks. I need juice when he doesn't just wants them. So I looked at his sugar pixel and it was like, you're you're not low buddy. Like let's like the juices that we try to reiterate juices are for low blood sugars, not just to have all the time when we want them. But I did a finger poke cause I thought, well, you know, Dexcom is wrong sometimes.
00:39:03
Cayley Gover
And sure enough, he was 55 sugar pixel.
00:39:06
Cayley Gover
Dexcom was saying he was like one 20 and he was 55. So, you know, we're, we know to listen to him if he says that he doesn't feel well, and now it's kind of like my tummy hurts or he'll just say, I need a juice. So he's catching on, but. It's been almost a year and prior to that, that's, you know, it's scary because you don't, they can't tell you.
00:39:24
amanda
Mm Mm hmm.
00:39:27
Cayley Gover
And sometimes Dexcom is wrong or sometimes we lose his connection. And so we wouldn't get the alerts at night. there were definitely some scary scary instances. Uh, and you just, pay very, very close attention to them.
00:39:42
amanda
Mm hmm.
00:39:43
amanda
So just wild. I feel like I could talk to you forever. We do have to wrap up soon.
Empathy in Healthcare
00:39:49
amanda
But the one question I have is after your son was diagnosed and having like a couple months of really like working with that, did that change? Was there like a moment of clarity where you're like, oh my gosh, like, having type 1 and being a CDCS and being a professional in the space isn't always enough.
00:40:14
amanda
Walking in the shoes of a parent is what now completely separates you.
00:40:17
Cayley Gover
Yeah.
00:40:20
amanda
You now have every facet of type 1 diabetes. I'm sure that you can just provide so much for parents because of that.
00:40:29
amanda
Was there a moment in time, like a moment of clarity?
00:40:32
Cayley Gover
I mean, I would I would say like in the hospital when he was diagnosed. It was like. You know, I knew that I could help people because I had personal experience and a lot of parents did find that helpful because they could ask questions about the future. But yeah, I mean, It was, a lot of it is like, healthcare system sucks.
00:40:51
amanda
Mm
00:40:55
Cayley Gover
The way that we are able to teach in the beginning is lacking and yeah, just the sleepless nights.
00:40:56
amanda
hmm.
00:41:05
Cayley Gover
Yeah, I had that for myself, but I, had not yet been a parent struggling with it. And struggling with like, do I get my two-year-old a cell phone? Like things like that, you know, that most people don't have to worry about. And now we're faced with these just very unusual decisions that we have to make. And, you know, the expense of everything, like extra phone and all these extra supplies and how we're gonna organize, there's just a lot. that went into it, but from a parent perspective, it's so much different when those decisions impact your minute by minute life. As an educator, even as somebody with it, you do your work and then you leave at the end of the day. You go back to your diabetes, but you're not involved in what's going on at midnight at that patient's house.
00:41:56
Cayley Gover
the stress that that issue is bringing to that family, you know, you can't. But yeah, it's so different as a a parent being like, oh, yeah, you know, you like try to kind of like help and put a bandaid on it, but it's just so much more involved now that you can, now that I can see through the lens of, someone with it as an educator and as a parent. And I think honestly, the parent perspective is the biggest piece of like now how I would treat patients or the kind of things I'd talk about with them.
00:42:22
amanda
Mm Mm hmm.
00:42:29
Cayley Gover
I think the parenting piece of it makes the biggest impact.
00:42:33
amanda
Yeah, it's because quality health care and top-notch bedside manner, in my opinion, is provided through empathy, like as much empathy as you can muster, which is unrealistic to ask of every single health care provider to go in at their most empathetic. Like, it's exhausting, and I get that. But, I mean, when Hattie was in the NICU that I worked in,
00:42:58
amanda
I went back to work a a completely different nurse, completely different, so much more gentle, so much more kind, more understanding, never took things personally, integrated love and care with the actual education.
00:43:01
Cayley Gover
Yeah.
00:43:11
Cayley Gover
You clock in, you clock out. Yeah.
00:43:12
amanda
When a lot of nurses don't do that, it's just like, you know, Yeah, yeah.
00:43:18
amanda
So that's, I hate for you that you're in that position, but I am glad for any future patients of yours, because they're gonna get top notch care.
00:43:29
Cayley Gover
Kaley 2.0.
00:43:31
amanda
So you'll make a serious difference. Yeah.
00:43:35
amandacberg
All right. Well, we do have to hop off, but Kaylee, thank you so, so, so much for coming on and sharing your story.
00:43:36
Cayley Gover
Link to this.
00:43:41
amandacberg
And if anyone wants to hear more from Kaylee, she shared about a lot of these topics and more on the super parents community in the super parents community on the honey health app.
00:43:48
amanda
In.
00:43:51
amandacberg
It's like such a hard thing to explain, but basically we have a community inside of this app called honey health.
00:43:56
amandacberg
It's completely free. There's videos from our entire team that go up every single month. So definitely go check that out. We'll link it in the show notes as always. And let's finish it out with a little blood sugar roll call.
00:44:08
Cayley Gover
Uh oh.
00:44:09
amandacberg
I'm 91 right now. I guess you can share you and Gabe's blood sugars if you want.
00:44:15
Cayley Gover
I am 95 and Gabriel is 169, two arrows down.
00:44:23
amandacberg
All
Closing and Farewell
00:44:23
amanda
There we go. You'll catch it before it goes low. Hattie's 105.
00:44:23
amandacberg
right.
00:44:27
amandacberg
Awesome.
00:44:27
amanda
So yeah. All right.
00:44:29
Cayley Gover
Ladies,
00:44:29
amandacberg
Alright.
00:44:30
amanda
Thank you again, Kaylee.
00:44:32
amandacberg
We'll see everyone soon. Bye.
00:44:34
Cayley Gover
Okay.
00:44:34
amanda
Bye.