Wednesday, October 28, 2015

"You brought the kit, right?"

Nathaniel's numbers have been all over the place recently. Lots of high blood sugars, especially, and lots of highs related to things like, "I used chocolate syrup instead of milk for my cereal!" and other genius moves. I was griping to my friend Amy about it, and she asked if things would ever smooth over, and if he'd ever be more steady. I sort of stumbled over words trying to describe my answer, which was yes and no.

Yes, it's possible. Yes, as he grows up and is more aware and takes over more of his own care, yes his numbers could smooth out. It's possible. But they could also get a lot worse, because of the no: it won't get better without a lot of work. I mean, I don't think we slack off now, although I do have brief moments of watching him eat something and pretending for a few minutes that I don't have to inject him for it. And we are pretty careful.  But the factors involved in really tight blood control require vigilance on the caretaker's part, vigilance that is exhausting, and is hard now because we are Nat's external pancreas, and he doesn't like it much. I mean, it's not a good relationship. It's rough on everyone in the family, that we have to watch all the time, and struggle with things like, "But HOW MANY cookies exactly did you take without telling us?" and, "Look, I know you don't want to drink the juice but it's that or the hospital." We've had lots of meals ruined because we had to, HAD TO, make Nat eat, or we'd be risking seizures or coma. Lots.

So, it could get better, as he starts to take over his own care. Maybe he'll be really good about weighing everything he puts in his mouth, maybe he'll always wake up at the right time to check his glucose and give himself his shots. Maybe he won't. But the terrifying thing is that it can screw up at any minute, if we, or he, fails to be careful. And even within the range of tight control are a lot of factors to take into account. If Nathaniel exercises more, if he'd more active, his glucose will drop faster. If he's excited or nauseous and doesn't want to eat, that makes things go wonky. If he's very excited, or getting sick, his sugars will soar and his body will start to metabolize itself for fuel, so we have to check, and do more injections, And repeated failures can have serious consequences- blindness or loss of extremities from frequent high blood sugars (long term), or passing out, coma, brain death from lows. I feel very much balanced between the two terrifying infinities.

I mean, I don't think about it all the time. I obviously can't. But there's always the edge of awareness that we're walking a tightrope, and that the responsibility is always there, and always weighing on us.

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