fulltimepancreas

[fulltimepancreas]

J’s Diagnosis Story

February 16, 2020.

Diagnosis day.

Diabetes day.

D-day.

The day all of our lives changed forever.

I spend a lot of time thinking about this day. Will this memory ever fade? A year later and yet it’s still so fresh. How long until I can drive past the ER again without a terrible feeling in the pit of my stomach and my eyes all welled up with tears? I have to look away because it still hurts too much.

It’s Sunday. My son J wakes up again with a stomach ache. It’s become a regular thing, so I don’t give it a second thought. Usually, once he’s fully awake and starts to play, he’ll get distracted pretty quickly, and forget. So when he tells me that he isn’t feeling well, I brush it off. In hindsight, it should have been one of many red flags. I missed it. I missed all of them.

We get a phone call from my sister-in-law who wants to throw an impromptu birthday party for our niece later in the afternoon. So I ask my older daughter, K, to babysit J while my husband and I rush to the store first thing to buy a birthday gift. I’m not at the store very long when I get a text from my daughter telling me that J has thrown up. Historically, whenever J is coming down with a cold or a stomach bug, the first sign that something is wrong is always a low fever and vomiting. So at this point, I’m thinking it is probably one of those two things, and so I finish up at the store and rush back home to take care of him. There’s no fever, but it's obvious he's coming down with something. He doesn’t have much energy or an appetite at all. I encourage him to hydrate and rest, and he does so for several hours. I decide to send my husband and daughter to the party without us. While they are gone, I offer him a popsicle (it’s blue and that’s important later) but not long after, he throws up again. The only thing he can keep down is water. After getting him all cleaned up, I leave the room for just a moment to carry some soiled towels to the l laundry. When I left him, he had been sitting up, propped up on pillows on my bed and he was watching tv. I’m gone for maybe 30 seconds, but when I return he has fallen asleep. Red flag number two. I text my husband to let him know what’s going on but tell him not to rush home. Since J is sick, sleep is good for him. I tuck him in, snuggle up next to him, and watch some tv while he sleeps. It doesn’t seem like too much time passes before I notice that he’s breathing differently. Is he breathing louder? Is it faster? I recall something about babies and fevers and breathing heavily so of course, I start to google. I don’t find any information that satisfies me, but I am prone to anxiety and I manage to convince myself that I am overreacting. Some time passes. He sleeps and his “different“ breathing continues but finally my husband and daughter return home. I’m starting to worry, and I express these concerns to my husband. And although we both think I’m probably overreacting for just a stomach bug, we decide to have him see a doctor. It’s late afternoon on a Sunday, so his doctor’s office is closed. My husband suggests urgent care. Now, my kids are healthy. Seriously, they hardly ever get sick. And for a cold or a stomach bug, I almost always just handle that at home. So when we get to the urgent care that’s closest to our house they tell us that they don’t take our insurance and they send us somewhere else. I carry my 70+ lb son back to the car because he is weak and tired and can hardly stand and we drive across town while my husband calls a different urgent care that requires us to make an appointment first. By some kind of crazy miracle, they fit us in for an appointment right about the time that we get there. We aren’t in the waiting room for too long. Maybe half an hour. He watches his iPad, alternating between my arms and my husband’s. This is very strange behavior for him because he’s almost too big to be held anymore but he insists. He also requests water to drink several times and dozes off a few times while we wait. The doctor finally comes in. He’s an older gentleman, friendly enough. He examines J pretty thoroughly, while I’m holding him in my arms and decides on a diagnosis of a stomach virus. He prescribes some anti-nausea meds and sends us on our way. He walks us to the checkout and I’m struggling again to carry J and he’s awake so I set him down for a moment to rest my arms. This moment probably saved his life. J kind of stumbles and it’s clear he is too weak to walk. The doctor sees this and asks us to wait a minute. He asks us to come back into the exam room and says he wants to check one more thing. He asks the nurse to get a glucose reading on my son. The nurse leaves the room to go and get supplies. At this moment, I have one of those literal light bulb epiphany moments like they show in cartoons. Suddenly and overwhelmingly everything clicks in to place and I just... know. His blood sugar is 300+. “Is that bad?”, we ask, and they only tell us that it’s high. The doctor says he’s sending us to the ER but he leaves the room to call ahead and tell them we’re coming. Diabetes, I say to my husband as the three of us are left alone in the exam room. Oh. My. God. He drinks so much water all the time. I have been calling him my “little fish out of water” for months. He wakes up all hours of the night to ask for more water. He pees constantly. He even wets the bed sometimes ‘cause he drinks so much. He’s lost weight recently but, hey... he was a little chubby to start with so that wasn’t really a bad thing. His stomach always hurts. Diabetes. I should have known. I should have figured this out. Oh. My. God. The nurse brings a wheelchair for J since I’m struggling to carry him. My husband brings the car around while I check out and we finally head to the ER. By some other kind of crazy miracle, the ER is in an adjacent building sharing a parking lot with the urgent care we are at. A few minutes later, we walk into the ER and sign in and sit down in the waiting room. Almost immediately we are called back. I’m carrying him the whole way and finally get to set him down on the hospital bed. Several hospital staff rush in and out of the room. Everything is a blur. He’s getting an IV in both of his arms and blood drawn and all sorts of things are being done but he seems pretty indifferent to everything and just keeps dosing off. And then at some point, there’s a bit of a fuss... because J’s lips are kind of blue (because of that popsicle I fed him earlier when I was trying to get him to hold something down). This becomes a bit of a running joke with the doctors later on. Blue lips generally signify a lack of oxygen so they were kind of baffled before I remembered to tell them about the popsicle. At some point, I look down at him and I start to cry. I’m freaking out. I’m scared and I’m sad and I know “diabetes” but that’s the only thing I know and there are so many unanswered questions and I can’t hold it in anymore. A nurse is putting in an IV (god, does he really need another one?) or something... I honestly have no idea because all the moments are blurring together but J sees me. And he asks that nurse, “Why is my mommy crying?” He tells my son, “It’s ok. Your mommy is just worried about you.” And I realize at this moment that he needs me to be strong for him right now more than anything. And when I tell you that I didn’t cry again (in front of him at least) the entire week we spent in the hospital, it is the truth. That’s significant for me because I’m usually an emotional wreck about every little thing. My husband gets on the phone to make arrangements for our older daughter to stay with family since they’re telling us we will be admitted to the hospital. She also suffers from anxiety so when we speak to her, I tell her as little as possible and I downplay the severity because I need her to stay calm and not lose it. I tell her everything is ok. I’m lying to her but I don’t know what else to do. I can’t think about that right now. We are at one of the smaller ERs, so after getting him all hooked up and stable and everything, they tell us that we’ll be taking an ambulance to the big hospital across town. Neither of us has ever been in an ambulance before and the EMTs are very friendly and cool so J is at ease. He’s awake for most of the ride and we talk about J’s favorite video games and the EMT shows him cool stuff in the ambulance. Later, he tells me it’s pretty much the only thing he remembers from the whole day. At the hospital, we go straight to the PICU (Pediatric Intensive Care Unit) where we will spend the next week. So much new information is thrown at us. So many words and numbers we won’t yet understand. (What is bolus? What even is a normal blood sugar number?) At some point, I hear that his blood sugar is in the 600s. I somewhat understand that he’s receiving both insulin to bring down his blood sugar and also glucose in his IVs at the same time because they have to bring it down slowly to prevent his brain from swelling. I don’t get any sleep, but luckily J is still exhausted and he spends most of the first few days asleep. Because once every hour, the nurses come in and they finger prick him to test his blood sugar. By the time we get home, there isn’t a single spot on any of his little fingertips that aren’t covered in bruises. The next morning, my husband brings K up to visit, and that cheers J up a little. But mostly he sleeps. He cannot walk to the bathroom or even stand up. And it’s like 48 hours before he’s even allowed to try and eat anything. While he sleeps, I read and then reread this book they’ve given me which is basically a starter guide to diabetes. When I’m done with that, I google and study everything I can find about diabetes. Looking back on it, before this, I really didn’t know anything at all about diabetes. And everything

I thought I knew about it was just misconceptions or flat out wrong. A constant stream of doctors and hospital staff are coming in and out of his room. We meet his endocrinologist, and the first thing he says is, “Yes, he has type one diabetes. Yes, I’m sure. No, you didn’t do anything to cause it. And no, there isn’t anything you could have done to prevent it.” Type 1 diabetes. Diabetic ketoacidosis. Kidney failure. F$#k. Eventually, he gets to have his first meal. A nurse comes in to teach us how to calculate an insulin dose. He struggles to find his appetite. After the first shot, and for several more shots afterward, the nurse brings him a toy that he gets really excited about and makes things a little easier. We watch a lot of movies. Toy Story and Lion King and their sequels over and over. The nurses are so kind and just incredible and probably the only reason why I’m able to hold it all together. Once or twice while he sleeps, I sneak into the bathroom to have a quick cry where I know he can’t hear me. My husband gets to leave the hospital for a few hours at a time to pick up our daughter or run errands and I can see how emotional he gets about everything but he can let it all out while he is away. I made a promise to J that no matter what, I would not ever leave his side so sneaking to the bathroom to cry is the only way I can keep it together for him. More days pass, and he is getting his strength and his appetite back slowly. On the fifth day, they ask us if we feel confident that we can handle everything by ourselves at home, and we are sure that we can. We have no idea. No f$#king clue. We stand in his hospital room, with his brand new meter and we ask the nurse for help to make sure we know how to work it before we leave the hospital and she isn’t much help and in the end, we have to figure it out ourselves. And that kind of sets the precedent for this whole disease, to be honest. We are given bare-bones, one size fits all sort of instructions on “how to diabetes” but we will learn pretty quickly that we have a lot to figure out on our own. I could tell you that it gets easier. And that would be sort of true. After a while, taking care of a child with diabetes becomes routine and things that seemed scary at first are like second nature. I know my way around a BG meter no matter the brand or type. I can check ketones and confidently give injections without a second thought.  I can safely calculate an insulin dose and find the carbohydrate count for anything, and even accurately guess the carbs (without looking it up or weighing) for probably every food in our house. I know what normal blood glucose range is for diabetics and non-diabetics. I know what bolus and basal are, and I know about all of the different types of insulin. I know how to apply, use, and remove a continuous glucose monitor. If you ask me a question about diabetes, I either know the answer or I know where to find it. I f$#ing KNOW diabetes. But every single day is different than the one before. What works today to keep my son in range may not give the same results tomorrow. Everything affects his numbers: food, activity level, stress, even the weather. And I guess that’s why it’s never gonna be easy. That, and the fact that giving him insulin is the only thing that can keep J alive while simultaneously being lethal if he gets too much... it’s like this huge, heavy weight that I have to carry every day. And when he gets older, he’ll have to carry it, too. And all I can do is to love him fiercely and to raise him to be strong enough to endure and until that day comes, to take as much off of his shoulders as I possibly can.