What I wish I knew after our son's DKA
Our son was diagnosed with Type 1 diabetes after a visit to the PICU. He was in diabetic ketoacidosis (DKA). Thankfully, with quick treatment, he stabilized and recovered and left the PICU the next day. For the next few weeks, we were calling in his glucose numbers every few days to the nurses at the pediatric diabetic clinic. While we were also given a binder of information and details, there were still things that I wish I had known for a newly diagnosed patient just out of the ICU.
That his glucose wouldn’t be normal. It took a while for his numbers to come down to a consistently normal level. For the first few weeks, his numbers were still 250 - 380. They slowly slid down to a more normal range. But in the beginning, we weren’t sure what was the normal process and what to be concerned about. It took about 4 - 6 weeks for his glucose numbers to stay in a normal range of 80 - 180.
That he would be really tired. He was still really sluggish that first week and fell asleep randomly a few times. That scared us at first because we weren’t sure what was normal. We were surprised at how easily some tasks would wear him out. Small excursions or walks would result in him falling asleep on the drive home. It took about 2 - 4 weeks for the fatigue to go away and until he seemed mostly back to normal.
While we were informed that he would be really hungry after he got out of the hospital, it would have been nice to know that it would subside (a little) after 2 - 3 weeks. Obviously, feeding a teenage boy is a never ending job, but after he got out of the hospital, he ate constantly for the first few weeks, which was a challenge with our initial food restrictions of 10 - 15 carbs. We spent a lot of time in the grocery store reading the label of every package trying to find healthy but filling snacks to help him replace the weight he lost. I made a lot of keto style food and baked goods so that he had plenty of foods to fill him up. Once we got trained on how to use carb counting, this process got easier. But the first few weeks were frustrating.
That there could be weird side effects. A few days after getting out of the hospital, our son starting losing a lot of hair. Thankfully, it only lasted for about 3 or 4 days and then diminished. The stress of the ICU caused all the shedding. Once it stopped, it didn’t return.
He wouldn’t remember much. We met with multiple doctors and had a 2 hour class with a diabetic educator before leaving the hospital. Our son remembers very little of that. We had to re-teach him all of that information and talk to him about what happened.
You may have to work through unusual problems. While our son adjusted to his new life pretty well for a teenager who had been through a life altering diagnosis, he still pushed back on some things. Being a teenager, it took a little work for us to get his to talk about what the problem was. He started refusing to eat food so that he wouldn’t have to get another shot. He finally explained that it was because the shots burned. With a little detective work, we realized it was the alcohol from him cleaning the insulin pen, not the actual insulin.