Bisi had to be admitted to Children’s Hospital in Boston to get her blood sugar down—but also so we could learn about type 1 diabetes and the glucose testing/carbohydrate counting/injection regimen that now needs to happen at least three times a day (with every meal and sometimes snacks).
Before this, most of what I knew about type 1 diabetes had come from a friend of Bisi’s who was over at our house for a playdate last year. She had a relative who had died of undiagnosed type 1 diabetes. (One of the dangers of diabetes is that if your blood sugar is too high for too long, acids build up in your blood and you can go into something called diabetic ketoacidosis, which can cause kidney failure and heart attacks, among other potentially fatal complications. Once you’ve been diagnosed, you are much less likely to go into DKA, though diabetics have to be especially careful when they get things like the stomach flu or pneumonia. Here's a more scientific and complete description than mine.) Somehow diabetes came up while I was serving them snack and I said something that in retrospect sounds to me both inane and ironic, like, well it’s important that everyone eat healthily to lessen the risk of getting diabetes. This little girl told me that getting type 1 diabetes has nothing to do with what you eat or how much you weigh—it just happens, it can happen suddenly, and we don’t really know why.
Now, a year later in the hospital, Mark and I heard a more complicated version of what Bisi’s friend had told us. Type 1 diabetes, unlike type 2, is an autoimmune disorder. For some people, there may be a genetic predisposition, and then some sort of environmental factor, or combination of factors, triggers the body to attack the pancreas, eventually shutting down its ability to produce insulin. While some people with type 2 diabetes can control the condition with diet and exercise, people with type 1 diabetes are dependent on insulin injections (but—and this may sound confusing—the type of food they eat and how much exercise they get affects how much outside insulin they need).
Our three days in the hospital were a crash course about the disease and the steps that we needed to take for Bisi before each meal. The torrent of information was overwhelming—it felt a bit like when you have your first child, and you’re learning so much in those early days that you can almost feel your brain stretching and expanding. Yet while that learning was joyful, this education at Children’s was upsetting but essential. Our minds were (and are still) raw from the new knowledge that our daughter has a chronic disease, yet we were asking our minds to work harder than they ever had to lock in this new information.
So here is an (extremely) distilled version of the routine they taught us we would now be going through before each meal:
1. Test Bisi’s blood sugar. (Prick her finger with a little needle called a lancet, use a test strip to suck the drop of blood up through the test strip and into the meter, wait five seconds for the result.)
2. Figure out how many carbohydrates she’s going to eat in her meal.
3. Plug these two numbers into a mathematical formula involving Bisi’s target blood glucose level (right now it’s 150, which is 70 or so points higher than what someone’s without diabetes would be); her correction factor (for her, one unit of insulin would bring down her BG level by 250 points); and her carbohydrate ratio (these days, she needs one unit of insulin to eat 55 carbs).
4. Draw up the dose of insulin based on your calculation. (Calculating this on the Children’s Hospital worksheet took us about five minutes; but Mark quickly found an iPhone app that calculates it for us—thank God for apps.)
5. Inject the insulin and wait at least five minutes for it to take effect before Bisi starts eating.
6. Make sure Bisi eats pretty much exactly the number of carbs she said she was going to when you calculated the dose, and that she eats it within 45 minutes or so of when you gave her the dose.
Anyone who has a child knows how difficult it is to get them to wait five minutes or longer when they’re really really hungry, or to eat exactly what they say they’re going to eat (except if that food is, say, ice cream with sprinkles). So there’s a lot that goes on between the lines to make sure these six steps happen.
Luckily, so far (I’m knocking on wood as I type), Bisi has been fabulous about eating pretty much exactly what she says she’s going to. In fact, she’s been pretty great about the whole thing; maybe most six year olds would be? I’ve been surprised by how quickly she’s adapted to and how well she adheres to this whole routine. But I do think that three days in the hospital (the last time she was a patient was when she was born) have a way of making a child take things seriously.
At Children’s, the process I described above was made slightly easier by the fact that the menu they gave us had nutrition information printed on it, so it was easy to count up a meal for her of, say, 4 chicken fingers (25 grams of carbs), ½ cup of broccoli (3 grams), ½ cup of milk (7 grams), and a ½ cup of vanilla ice cream (16 grams). But, even with our nascent understanding of diabetes, there was a lot on that menu that we didn’t think we’d be serving to Bisi once she got home. Why would we give her the empty carbs of a hamburger bun—27 carbs, for which she’d need a half unit of insulin—or Teddy Grahams (27 too), or French fries (18 grams for a measly 3 ounces)? Or what about the sugar jolt from a regular-sized yogurt with 42 carbs? (In yogurt almost all the carbs come from added sugar.)
Also, there were the mysterious sugar-free items that started showing up by her bedside, even though we hadn’t requested them. Bottles of Crystal Lite lemonade and containers of Jello made with Nutrasweet. We didn’t serve Bisi much juice or jello before she was diagnosed; why would we start now? Her endocrinologist, who happened to stop by when her tray was piled with unasked-for sugar free treats, clearly felt the same way we did. I told him that we ate pretty healthily at home, and I didn’t imagine that Nutrasweet was going to become a big part of Bisi’s diet just because of this new diagnosis. (This is not to say that I don’t give her some sugar free gum now and then when other people are having treats that she no longer can—but sugar-free treats are a small, back up weapon in our arsenal rather than something we rely on often. Perhaps our feeling on this will change as our understanding of the disease—and how Bisi does with the disease—evolves.) He quietly slipped the Crystal Lite bottles and Jello containers into his lab coat pockets, and continued on with his rounds, probably with a stop by the nearest trash can.
There was a lot we didn’t (and still don’t) understand about diabetes. But we now knew that Bisi would be insulin-dependent for the rest of her life (barring some yet-to-be discovered medical miracle). We knew the basic steps of how to take care of her. And we also knew that we would address this disease by trying to feed Bisi (and the rest of us) the healthiest food we could.