Tuesday, May 03, 2005

Is the Honeymoon Over?

I don’t know. Joseph’s been running high for several days now– night and day. Mostly low to mid 200s. Corrections, set changes. Basal rate and bolus adjustments. Nothing seems to help. It’s possible he’s getting my chest cold (which really sucks– I’ve got an awful hacking cough, and depending on the listener’s age, my voice sounds like Lauren Bacall’s/ Brenda Vaccaro’s/Demi Moore’s).

Cold viruses have shot him up before.

So right now I'm waiting to do another blood sugar check. Joseph’s upstairs playing in his “world” which is comprised of many exciting imaginary figures who battle all manner of monsters. Lately, he’s been interested in learning how to play Dungeons and Dragons – reading the core rulebook, and acting out the part of the character he hopes to create: a half elf who possesses magical powers, and the ability to defeat any foe.

He was 497 when he called this morning from the nurse's office at school.

497.

He hasn’t been that high since diagnosis. God, maybe he really is coming out of the honeymoon. Why the hell does that bother me so much? It’ll probably make controlling his blood sugars so much easier. After all, there won’t be that “mystery dose” of insulin coming from his pancreas – the dose we can’t possibly factor into our calculations.

But just typing this right now has me crying. Why am I so attached to those stragglers? Those stubborn beta cells that didn’t die with the rest of them. I’ve told myself that it’s because a cure might be found that would require these cells. It’s possible. Taking in less insulin is better. And it is.

But truthfully, I don’t think I can give up on these cells because they are all that’s left of my pre-diabetic son. When they're gone, he'll have nothing in his body making insulin. Nothing at all.

I know. Joseph is the same amazing kid he was before all of this happened. He hasn’t become someone else. But the child who could eat what he wanted, when he wanted, without having to THINK about it, is gone. The child who didn’t have to have a cannula inserted into his belly or hip every 3 days. Who didn't have to carry emergency supplies wherever he went. Who didn't have to know when his blood sugar was dropping. And be afraid when it did. Who didn’t have to worry about being different in a way that few of his peers understand. The child who didn’t have to grow up so goddamn fast.
He’s gone.

7 comments:

Shannon said...

Hi Sandra,

I found you through Amy. It sounds like he's getting a cold based on what happens to my son. No matter what we do to correct, bolus, etc, nothing seems to help. But, when he is coming down with a cold we do give him a temporary rate for the first 6-8 hours of the day at about 20% so that we set it for 120% on his pump. Those first 6-8 hrs he runs high and at night he's OK. Think about trying that and see if it helps.

Shannon said...

Silly stupid me. Amy emailed me telling me about you, so I went to her site to get the blog link. I knew you sounded familiar, so I just checked my blog and sure enough that was you! Sorry.

Sandra Miller said...

Hi Shannon,

No problem. I'm reading so many blogs myself, I can see where you could lose track...

Anyhow, you know I thought Joseph might be getting a cold too (he's had this happen before with them), but so far he's shown no symptoms. And the basal & bolus adjustments we've made that have finally gotten his sugars under control have been substantial (i.e, increased his 10am to 8pm basal rate from .025 u/hr to .175! and his overnight rate from .125 to .175).
I spoke with his clinic yesterday and, like you, they said to watch for cold symptoms. But they also said it does sound like he's moving out of the honeymoon. Though this again, could take a while. He's still taking in far less insulin than a child his size who's not in the honeymoon.

We'll see what happens.. For now, we've gotten his sugars back under control.

Thanks for the input.

BTW, when was your son diagnosed?

Shannon said...

Hi,

My son was diagnosed the week of Thanksgiving (of all holidays!) in 2002. He was 4 mos shy of turning 4. We put him on the pump 10 mos after he was diagnosed. I couldn't wait to get him on it.

Sandra Miller said...

Shannon,

Good for you for getting your son on the pump so fast!

I felt exactly the same. And it's funny how much resistance I got early on from both Joseph's clinic and other parents of diabetic kids. Everyone said you should wait til after he's had diabetes for a year or longer before even considering the pump.

That was not an option. Everything I read (and I read A LOT) supported going to the pump sooner rather than later.

And despite some of the difficulties we've encountered since he started pumping, I don't regret the decision for a second.

Shannon said...

I think it's standard for doctors to say wait a year. We were told it was because they wanted patients or parents to know the basics before starting the pump. We had done so well with his management that his team felt there was no reason to wait any longer. Brendon's endo is type 1 and on the pump, so the support was tremendous to say the least.

Violet said...

Sandra, this is a poignant and beautiful expression of what you're going through with your son. Thank you for sharing it.

Being still in my own honeymoon, I have to admit that I'm afraid to see it end. Control seems hard enough. But your next post--and comments from folks like Kerri who found themselves more "level" after the random production of insulin ended--give me some hope that maybe I'll actually thrive when the rest of the beta cells have danced their last number.