Season 1 Episode 2
Introduction: Welcome to the Diabetes Goddess podcast and I’m your host Barb Wagstaff. This podcast focuses on the fact that you’re more than your carb to insulin ratios or your time in range. Your diabetes may very. And while I’ve played a doctor in real life for many years, I am not a medical professional and any opinions expressed on this podcast does not replace medical advice. Please remember to always consult your doctor before making any changes to your diabetes care.
Barb Wagstaff: Welcome again. This week I thought I’d take you back to where it all began. The story of how I went from having no real knowledge of diabetes to being dubbed the diabetes goddess. So get comfy. This was a very bumpy ride.
So, I had really never had any real knowledge of what it meant to have diabetes or what was involved in diabetes care prior to March 17th of 2000. I had seen type one diabetes in the wild before. My mom had a friend who’s son had type one diabetes. When we went over to play he was sick a lot. He was laying on the couch. He got to sit there and kinda chill and watch TV while we got shoed outside and had to go and play. As an adult, I met one or two people who had diabetes, but they seem to just take a needle, which I never really would see and they drank diet pop. When we were out it really seemed like no big deal. Until I found out exactly what a big deal it was. But that didn’t happen until March of 2000 as I said.
1:56…But in March of 2000 I was the mother of a 2 year old son and a 5 year old. And my 5 year old was super excited because the month of March was his birthday month and he was going to turn six. We were going to have a party. It was going to be a big event as it always is for a small little boy. But March was also of course flu season.
My 2 year old was a little off. He was tired. He was extra cranky. He just seemed to just basically be miserable, but it was flu season and I assumed that he had come down with something. As days kind of wore on he was clingier and clingier. I could hardly do anything. He wanted me to be carrying him. He wanted to be asleep in my arms. He wanted to be cuddled all of the time.
He was normally little ball of energy who raced around and the only person he would cuddle with was his dad. But at this point in his life it didn’t matter. He just wanted mom. He wanted to cuddle. He was sleeping a lot and I didn’t mind him wanting to be cuddled in some respects, but it really was hard to get anything done. But he was two. He had molars that were coming through and probably he was teething and he seemed to cuddle and sleep and drink and that was kind of it. That was like the repeat—cuddle, sleep, drink, and, of course, he peed because he drank a lot. And when I mean a lot, I mean he’s soaked his diapers! There just weren’t enough Pampers in our house to deal with him. It was crazy. We would have blankets on the couch because he was just soaking through everywhere. But I couldn’t go stop drinking so obviously if he was drinking so much he had to be peeing so much.
3:36…He was a bit fussy he was tired, but again he was two. There was teething. There was flu season. There were all sorts of excuses for why he was the way he was. But it all kinda got to be too much after a bit. And one Sunday morning, he came walking into my kitchen looking a little peaked. And he was holding something in his hand and he was rubbing it on his tongue. Well it turns out that he was holding his brothers dirty sock and he was using this sock to scrub his tongue. He was trying to get these little white spots that were on his tongue and his father and I looked at each other and we were kind of grossed out that he would resort to sticking a dirty sock in his mouth. And then we were of course also concerned because what in the world were these white spots all over his tongue? So, we picked him up and we decided to take him to the emergency room. There was obviously much more going on than just the flu. Much more than than teething. So we packed him up. Sent our other son off to stay with his grandmother while we drove 45 minutes to our local Emergency Room. And we waited in the emergency room. And eventually the doctor came in. And he looked over my son.
5:21 And he said, you know, “Has he been throwing up?” I said, “Well, funny enough he just threw up on our way to get in here. We had a little bucket and he was throwing up along the way.” He said, “OK, but is he drinking a lot?” “Oh my gracious,” I said, “he does nothing but drink, drink, drink, drink, drink!” He said, “OK”. So he left and he came back and he gave us a prescription for some antibiotics. He said he had thrush, which if you know anything about thrush, it’s it’s a yeast infection basically, of the mouth that tends to happen to small babies. It’s very unusual for it to happen to a 2 year old child, but at that time we didn’t really know anything about it. We didn’t understand, so we took our antibiotics, and took our son, and we headed home because according to the Emergency Room doctor it was no big deal. He had the flu and all was fine.
We got home and nothing changed. We gave him his medication. He was still getting more and more lethargic. He still was drinking. He still was constantly peeing and I decided that that’s it. We take him to our family doctor. So I booked an appointment with our family doctor and again going to our family doctor requires another 45 minutes drive into the nearest town.
Our appointment was at 1:00 o’clock. We were the first appointment after lunch. There’s actually, they usually book a few people at that time, so our appointment was probably about 1:15 because there were people ahead of us. And our doctor was always notoriously late after lunch. He would do house calls during his lunch-hour, and he never got back on time. So, we sat with this 2-year-old little bundle in my arms. His feet were ice cold. I had put wool socks on his feet to keep him warm. And he had kind of a labored breathing and all he did was sleep. He just slept in my arms and the people in the room around us, in the waiting room, they looked at us and looked at a 2-year-old who wasn’t running around playing. All he was doing was just laying in my arms. And it didn’t matter what time our appointment was, when they called out the other people they said, “No. You have to take this little boy first.”
7:52…So when the doctor came in, I took my son, still carrying him in my arms, into the waiting room and waited for the doctor to come in. And receptionist, who had known both my children since before they were born, had a really worried look on her face. And she looked at my son, and she she touched his little cheek and again he didn’t stir. I told her, I said, “Look his feet are so cold and yet I have wool socks on his feet! Like his feet shouldn’t be cold!” And she just kind of smiled at me. And she said that the doctor would be in soon. And the doctor walked in. And again he just looked at this, my son in my arms, and I gave him a little bit of the background of what had happened. How we’d been to the Emergency Room. How he had white spots on his tongue. How he had been drinking up until then. How he had been soaking every diaper we could put on him, and how he becomes so lethargic and listless and was so cold. And the doctor looked at me, and he said, “I’m going to send you for blood work right now.” He says, “I’m going to make some phone calls and I want you to go over to the hospital. I’m going to set it up so you don’t have to wait. I want emergency blood work done.” He said, “I think your son is in diabetic ketoacidosis.” That meant nothing to me. He said, “Maybe, if we’re lucky, all it is is he’s got a lung infection, so I’m going to order a chest X ray as well, but I need you to go to the hospital now. I don’t want you to stop for anything. I don’t want you to do anything else, but leave here and go directly to the hospital.”
9:45…So I went. I was still clueless as to how serious things were. I was kind of in my own little protective bubble. And we went to the hospital and I held him in my arms. He still hadn’t woke up and we got the blood work done. And the faces of all the technicians well had a lot of concern. They looked kind of scared. But I didn’t, didn’t really know what was going on. I was in my own little protective world, my own little protective bubble. So, I took that lifeless little bundle and I had to sit him up to get an X ray done. And the X ray technician just looked terrified and she took the X ray and then she said that it would be sent to the doctor immediately. Not to worry. So back we went to the, to the doctors office. We sat in his clinic, and this time I was facing a wall, and like any doctors’ clinics there was all sorts of information on the walls about different conditions and such. And I saw on the wall, this thing that said, “Do you have these symptoms? Frequent need to urinate. Thirsty. Blurred vision. Fruity breath…” and the list went on, but I realized that those were probably the signs that my son had. Those were his symptoms.
11:09… and it said that if you had these symptoms that you should consult your doctor because you probably have diabetes. Again I didn’t have a clue what any of this meant. Diabetes, in my mind, wasn’t a really big deal as I said at the beginning. Diabetes was something that a child that I knew when I was growing up had. He seemed OK. He got out of a lot of stuff. He didn’t have to do things that his brother did or that we had to do, but it wasn’t a big deal. It wasn’t like, like the deal in front of me where my son was just kind of cold and laboring to breathe. It didn’t take very long as we sat in that waiting room before the doctor came out and called us in. We didn’t even get into a room this time. He just called me outside of his office, into the hallway, and he said, “I need you to take your child and I need you to get to the hospital now.” Not to the local hospital. There was another hospital that we needed to get to. Where “there’s going to be a pediatrician waiting for you.”
So, we had to drive another 45 minutes to get to the next hospital. He said, “I, I need you again, don’t stop for anything, don’t do anything, but drive directly to this hospital. The doctor will be waiting for you. They will then take care of you. Your son has diabetic ketoacidosis. He needs to be seen instantly.”
I still didn’t really know what was going on, but I could tell the terror in his voice. I knew that this was something very, very serious. So I got in the back of our car at this point ’cause he still hadn’t woke up. He was still laboring to breathe and it was getting scarier and scarier. My older son was with us and their father drove in our Jeep. We drove the next town and it turns out that we drove through a snowstorm. I couldn’t tell you anything that snowstorm. My son can. I don’t have a clue. All I know is that I sat in the back. I always put my kids in car seats, but this time he wasn’t in a car seat. He was in my arms and with every breath he made, I was thankful, and I prayed to God to let him breathe again. The horror and the terror and the reality of what was happening was starting to sink in and I was so scared. I held onto him. I listen for every breath, and I prayed like I’ve never prayed in my life. I just prayed that he would live and that we could get through there. I prayed that every one of my breath, that it could, that I could breathe for him just like I had done 2 1/2 years before. That I could breathe for him and that he would be OK. And we kept going and we drove and to ask their father, at the time, how he got there? He doesn’t know, but we got there. And when we got into the emergency room, he dropped me off the door. He went to find a parking spot, but he dropped me and my younger son at the door. And I got up to the wicket holding this lifeless child in my hands, and of course there’s paperwork. They needed his health card and all this stuff, and I’m just like, “I don’t have time for this he needs to see his doctor. Like we can’t wait. They told me I have to see the doctor.” And she was kind and she was patient. She took my information. She got me through as fast as she could, and then she was about to tell me where I had to go next. And she didn’t bother, she said “just wait a second.” And she came out, and she led me to where I had to go next, which is probably good ’cause I’ve been lost in the hospital. Its not that the hospital was huge, but I couldn’t think anymore because I was still focused on breathing and praying that everyone of my breath that that would breathe some life back into my little son. So, we eventually managed to get to the pediatric floor where they were waiting for us. And they took my son and they put him in this bed and then they weighed him. And he weighed eleven kilograms which is about 22 pounds.
15:37…He weighed hardly anything. He was like 7 pounds when he was born. He was 2 1/2 years old and he’s weighing 22 pounds. How did I not see that? How do I miss how skinny he’d become? I didn’t know. I mean I had great reasoning behind it. He was always my slimmer child. He was so active keeping up with his older brother. It didn’t surprise me that he was thinner, but he was beyond thin. How did I miss that? What kind of parent was I that I missed that?
They eventually laid him in a bed and they tried to put tubes in him. And this man came in. He looked kind of like Grizzly Adams. If you don’t know who Grizzly Adams is, go Google it. I’m sure the image will really give you an idea of what this man looked like. He came out with this big beard and his parka and snow and his boots flapping ’cause there was a winter storm on outside and he was the doctor on call. And he looked at my son, and he looked at me. And he said, “This child has to go to intensive care.” He said, “We’re going to do what we can but the next 24 hours are going to be critical. If he lives, then I’m going to have to teach you how to deal with a child with type one diabetes.”
My heart stopped. That’s what I had been fearing driving in. Not the type one diabetes part ’cause I still didn’t know what that meant, but he has said those words “if he lives.” My heart shattered. We went into the intensive care unit and I sat beside him. And I kept holding his hand. And I kept praying and then we had to leave ’cause they had to put in a heart line. And they would allow the parents to stay while they put a heart line in ’cause they just couldn’t get his little veins of course. And they told me that they had to be careful how much insulin they gave him because if they gave him too much it could kill him, but if they didn’t start bringing down his blood sugar levels that was going to kill him. So, the medicine that was going to save him could also kill him. That’s something that we know now, constantly. That became a balance for the rest of our lives. The insulin that would save him could also kill him.
18:16…So while I left that room, I now had to go and make some phone calls. My children’s father, my husband at the time, had gone and called his parents. His sister had already made calls to the hospital. She had called. She knew that we had gone to the doctor’s office and we hadn’t come home. So she called the doctors office who told us, told her, that we were in Cornerbrook. That was the the local hospital, so she told them that that we were gone on. He told her that we had gone on the next hospital and then I had to make call to my parents. So I called my mom. I don’t know what I said beyond pray for us. I told her that my son was really sick. That we didn’t know, but we had to wait 24 hours till we could see. And then I asked her to tell everybody else I said ’cause I can’t. And so she did. She called family. She called my dad, and people began to pray for us. And whether you believe in prayer or you don’t believe in prayer, positive energy, positive thoughts, I know that made a difference that night. I know that there was a lot of people that were thinking about us at night and a lot of people praying for us that night. And to this day I am so grateful. And I’m grateful to the staff that helped us. That night my younger (oldest) son and his dad slept out in the waiting room. And I stayed in the chair beside my, my little baby. My little boy holding on to him. Catheter in him. IV lines. This lifeless little boy laying in that bed and I waited to see if this miraculous drug called insulin was going to save his life. I’d failed him.
20:27…Obviously, it was my fault that he reached the stage, right? That we only had 24 hours to see. They didn’t know. Would giving him this insulin and bringing him back with that cause kidney failure or would he have a stroke? A two-year-old have a stroke? It was beyond my imagination. I couldn’t, couldn’t imagine. This was something that we had to consider, but we did. We had to consider all these things and we waited and we waited. And the morning came and things began to change. He began to stir in his little bed. Tiny little thing he looked in his big huge hospital bed! And he began to stir and he began to move around. And became kind of uncomfortable with all these wires and tubes. And oh that tube in his penis that really had to go! He was so not pleased! And my son was back.
It was going to be OK. We were going to be OK. And the doctor eventually came in and they moved him back down to the paediatric ward. And he told me, he said, “ OK, now you start to learn. Now you’re going to begin to learn how to manage type one diabetes in a child. We’re going to give you some education. You’re going to see a nurse. You’re going to see a dietitian…” And he continued to talk and in my head I heard this little voice that said, “This is what your life is about your life is going to be about– helping people to manage type one diabetes.” and this is kind of the where it started.
22:19..He went on and we were in hospital for two weeks. And we had lots of highs and lows in more ways than one. I watched more Land Before Time than you could possibly imagine. He had one video, ’cause it was video then people! We watched one video tape over and over and over and over and over! I had nightmares about Land Before Time for awhile after that, but two weeks. We were in the hospital. We were educated and then we were sent home.
And that first year? Well there’s more stories, but that’s for other episodes, about that first year. But for the first year basically I was on autopilot. I lived by the clock. I was stressed out if snack time didn’t occur at snack time and if lunchtime didn’t happen at lunchtime and if my son refused to eat his breakfast? Well, like I said, we have more episodes because breakfast was a whole episode unto itself!
Our life was hell. It was not easy, but even when it wasn’t easy,I looked at the alternative. How it was better than the alternative. I still had him here.
If you’d like to learn more of the warning signs of type one diabetes I will have a link down in the story notes that you can share with other people because had I have known those warning signs? I wouldn’t have been OK with the ER Doctor who just allowed us to go home with antibiotics. I would have demanded insulin then but I didn’t know.
10 years later, when I confronted that exact same doctor he told me that he didn’t know. That in his world, well it really it was rare that a child who was only two would present with those signs. Now I had later learned that a child even younger than my son had presented the month before with the same signs, but in their case, that child had a nurse who knew the science and was able to say hey! and get her tested. So know the signs. It can absolutely save a life. It could save a lot of heartache. Diabetes is scary. I hope you will continue to join me as we talk about more things diabetes related. Happier things and things that just need to be talked about. Until the next time. Wishing you all great blood sugar levels.
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