So how has day-to-day life changed around here? Well, here’s our new daily routine:
2:00 AM — Wake up Caleb and check blood sugar
6:30 AM — Get up, plan a breakfast that isn’t too carby but that includes at least 10 grams so that the insulin won’t make the blood sugar drop too low
7:00 AM — Check blood sugar after fixing breakfast. Eat breakfast.
7:30 AM — Calculate insulin needs based on breakfast consumption. Here’s the formula:
Beginning blood sugar – 150 = _________ divided by 25 = A
Number of total carbs consumed in meal divided by 10 = B
A + B = the amount of insulin needed after the meal.
9:30 AM — Check his blood sugar again to see where it is after eating and taking insulin
11:00 AM — Start the whole process again
Plan, pretest, eat, calculate, inject, post-test after 2 hours. Then it’s just a few more hours before we do this for supper, and there’s usually a snack between lunch and supper. A snack that can’t be more than 15 carbs (even a small apple has 12-13) or we have to add another insulin shot. Yesterday Caleb wanted something that added up to around 18. His answer: “It’s just not worth the shot.”
Bedtime is one more check and snack, followed by an injection of 40 units of a long-acting type of insulin that holds him overnight. Then 2:00 AM rolls around again and it starts all over.
Did I mention that we have to write all of this down and call our nutritionist each week with his blood sugar levels, numbers of carbs eaten, and the units of insulin that we give him? Yep — ME — the Queen of fly-by-the-seat-of-my-pants now writes down EVERYTHING related to this. I can tell you Caleb’s blood sugar level at almost any 2-hour interval this week. We have a special notebook that stays next to the drawers full of glucometers, insulin pens, and testing supplies and it has all sorts of paperwork in it. School orders, an 81/2 x 11 page of prescriptions, a full page of doctor’s orders that outline this routine, and pages and pages of blood sugar logs. We also have a white board on the fridge to do the calculations for carb totals and insulin needs. I don’t think we’ll have to keep such meticulous records forever, but at the beginning this is necessary. We have to see if the insulin formula they sent us home with is going to keep things in check.
Overall, Caleb is doing much better. He’s in the living room playing Guitar Hero right now and yesterday we got out and ran errands. We’ve been able to request that he be put in the classroom of a teacher whose daughter has Type 1 Diabetes and we have school open house this afternoon. It still scares me to realize that someone else — several someone elses — are about to become very involved in this process. Most things are going well, but yesterday his numbers were a little high. I think it was because he drank diet sodas (which are allowed) instead of green tea. I think diet sodas will fall into that “everything is permissable, but not everything is benefical” category from now on.
So we’re still learning, still adjusting, still monitoring, and still thankful that insulin is even available. We’re also still hunting for good, easy-to-prepare foods that will meet Caleb’s needs and everyone else’s tastes. We also need ideas for easy snacks that we won’t have to think about. Although the primary problem is that his body will hold onto blood sugar without the insuliln injections, if he doesn’t eat at regular intervals, his levels will go too low and cause problems with low blood sugar so snacks between meals are necessary. We also carry an emergency kit with a glucometer and several pure-sugar foods in case he ever has a low blood sugar crash.
It’s a lot to think about. Sometimes my brain gets tired trying to process it all, but I know that lots of other families are living with this and living victoriously. It’s mostly a matter of learning new habits and routines. After it becomes routine and newness is gone, I think it will be much easier.