When we were released, we headed home with our heads full of new concepts. We were put on a sort of diabetes 101 regimen. Every meal was supposed to be roughly the same number of carbs so that dosing would be easy, and every low would be treated in the same way – with 15g of glucose. The idea was to master the basics before learning the fine points and not to go too crazy on food choices. There were tools to look up carb counts of common items, both online and in small booklets – a piece of toast is 20g, a juice box is 15g, a clementine is 9g etc. So using these counts you could construct a meal of the right proportion from a glucose perspective.
One thing we learned is that we actually had to add carbs to our diet to meet the prescribed daily amount, as we had tended to be fairly low carb consumers. This seemed counterintuitive, but we knew that we needed to learn and to help him learn how to deal with the carb loads he would get at school and when he went out to eat, so we tried to stick with the program. Very shortly after he returned from the hospital we realized it was going to be Mother’s Day. My husband was not at all up for going out to eat and all of the unknowns of a restaurant meal, but Kaelan and I decided there was no time like the present. Naturally we hadn’t made any reservations, and after driving around to see where we could get in, we ended up at Applebees. We realized we had different eyes in terms of what you get to eat at a normal chain restaurant. They had things that were massively carb loaded which wasn’t something we were ready to deal with, and were very shy on “good carbs” like fruit and vegetables. I don’t know what we were expecting, I mean duh, but when you are trying to get to a preset number of carbs at a place like that it is actually quite difficult. We both remember that meal as being truly awful, but we felt good about going, about facing the reality, and dealing with it.
Back home we had to develop a regimen of sorts for when we would check his glucose and who would do it. Obviously we had to check before meals, then dose based on his bg level and his intended carbohydrate intake for the meal. (We introduced a scale to our routine to practice our carb counting.) We also checked his bg maybe an hour after meals to see if the insulin had managed the carbs, and then of course there were nights.I think the very scariest thing for any parent of a T1D child is the thought that they could go low or hypoglycemic in the middle of the night and not wake up. It happens. There is a terrifying name for it, which I am not even going to repeat because you can read it elsewhere and it actually sickens me. But when a child is initially diagnosed I think you tend to be maybe overly zealous about these nighttime checks – which means not sleeping for at least one parent, and depending on the outcome of the test, maybe for the child too because they may need to eat. I remember many a day in those early weeks that Kaelan went late to school because he had been up in the middle of the night and was exhausted in the morning. Fortunately for us, the school’s attitude was one of total support. “Do what you need to do” kind of thing. Kaelan missed a lot of mornings and had they stuck to the policy he would easily have exceeded his absentee quota.
Speaking of the school, our first stop on his return was to meet with the school nurse, work out a written diabetes plan with her, which included where to keep supplies, when he would have access, how much he needed, who would administer insulin, who was trained on glucagon (a shot that is given if the child passes out from severe hypoglycemia) administration, etc. Without going into a lot of detail, we came up with a plan that allowed Kaelan to be fairly self sufficient quickly and to manage his own insulin dosing. The only real rule was that if he was low and needed to go to the office to get supplies he needed to take a friend so that he wouldn’t be at risk of passing out alone somewhere. He carried skittles with him in tubes that were in his “glucose bag”, a smallish red backpack that was supposed to go with him everywhere. In it he also had testing equipment – meter, lancet, strips, as well as glucagon, sugar, an insulin pen, basically anything he might need to manage his diabetes in class or on campus. We took the position that we were not going to hide his diabetes, that he would tell his friends if and when he wanted to, that he would inject insulin in the classroom or at the lunch table or wherever he happened to be – basically that it was his job to take care of himself and that he didn’t need to apologize for it to anyone. I think he told his close friend group immediately and then anyone else who asked what he was doing when he was testing or injecting as it came up. His glucose bag came to be a well known item at school, particularly since he had a tendency to leave it in the band room, the gym, the locker room etc. As a parent you want to think that such important supplies would never leave his side, and the backpack helped, but it was not foolproof. You have to take it off to play the saxophone, or in PE, and frequently on the playground. The good news is that everyone understood it was a medical bag and it nearly always found its way back to him very quickly. Once or twice in all of his middle school years we had to go to school after hours and beg one of the janitorial staff to let him in to find it. I should say though that we had backups for everything at home and also with the nurse at school. We wanted to keep his bag and the medical supplies in it in tact, but we never took for granted that this would always be the case.
It’s complicated introducing a whole new way to think about food into your life, to count the carbs of everything you put into your mouth, and to replace your pancreas in deciding how much insulin you need. All these things are visible and time consuming, and I can only imagine how easy it would be to just not do it, especially at 11 yrs old. But I have to say that Kaelan showed a remarkable degree of maturity and grace. He explained Type 1 to dozens of friends and strangers without the slightest hint of “woe is me” attitude. He worked hard to fit into the school routine without much fuss, but also to accept his diabetes in a way that was impressive. He virtually never complained, and we in turn tried to make sure he didn’t have reason to.
Growing up T1D 