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.
They did the same thing to us at Dallas Children's I never had any interest in artificial sweeteners, and that hasn't changed, she wanted water with all her meals in the hospital, but they'd try to push diet sodas on her. She didn't even want them. That's not o say my kids never have soda, but we do not keep it in our home. We will get it on the rare trips through the fast food lane, and as a treat. I was baffled that sugar free artificial chemical blech seemed to be what a hospital wanted to feed a six year old!
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