Well, we are home. After nearly two weeks away (including 9 days on a mountain lake in northern Idaho) we're all somewhat glad to be back. Joseph had an awesome time-- he was one of six kids at the lake. And the only boy. In addition to Evan, there were two 10- and two 13-year-old girls.
Initially, I was a bit worried when our friends told us they'd be bringing along two of their daughters' friends. I thought that Joseph would be anxious about being so far outnumbered. So, a few weeks before the trip I shared the news with him:
"Joseph, it looks like Anna and Margot will each be bringing a friend this year-- both girls," I said, rather tentatively.
Then I watched for a reaction-- fully expecting disappointment, possibly a blow up. Best we get that out of the way before we get to the lake.
As Joseph looked up from his breakfast cereal, his mouth formed a huge grin. I simply stared a moment, more than a bit flustered. Then, before taking another spoonful of cereal, he said, while slowly nodding his head-- still grinning, mind you:
"Four babes . . . cool."
Needless to say, he had no trouble hanging out with this group of lovely young girls. (Oh, by the way, they liked him too).
So the vacation was fabulous. Lisa and Daryl are two of our oldest and best friends, and we've been doing this trip since before we all had kids. These are the kind of friends with whom you can cook (we all LOVE to cook), hang, play cards til the wee hours, and not feel like you have to fill every silence.
Simply put, our time with "L & D" was, as it always is, rejuvenating for all of us.
Now, you might think that given my description above, our time away was a study in relaxation. And in many ways, you'd be right. But you know, with diabetes, life is never, even in the most relaxing of settings, a long quiet river. There are always the unexpected rapids. And I'm afraid this trip was no exception.
As I mentioned in my previous post, we decided to try the "untethered regimen," which, for the most part, worked well. Joseph would inject himself with Lantus in the morning, then stay disconnected for most of the day (while swimming, canoeing, etc . . . ) -- reconnecting for food boluses and for the overnight. Now, to make sure he wouldn't be getting too much background insulin, we adjusted his basal rate down in proportion with the Lantus he was getting by syringe.
What really surprised me was how high his sugars got at night-- especially given how active he'd been during the day. Ryan and I shifted off checking him (every 1 1/2 to 2 hours), correcting, and even getting him up to use the bathroom (we'd promised him that we'd keep him from wetting the bed). I even had to do some set changes in the middle of the night-- in case a bad set was behind the persistent highs (which never really seemed to be the culprit).
In addition to the nighttime highs, he had some highs during the day as well-- not nearly as difficult to control, but requiring adjustments nonetheless. We kept increasing his basal rate (from as low as .025/hr to as high as .225/hr at night), adding more Lantus, and changing his insulin-to-carb ratios (from 1:30 to 1:15-18), until he was taking in almost 23 units a day (up from between 9 & 11 units before our trip).
What the hell? Was this it? Was he coming out of the honeymoon? Seems like every time Joseph's sugars go consistently sky high, and stay that way for days, I assume that this is it. Just look at the last time this happened. I was absolutely convinced that he was coming out of the honeymoon. But that time his highs were-- according to his endocrinologist -- caused by a growth spurt.
Well, here we go again.
And all this time, I wondered, was it the out-of-control highs of his week at camp that had killed off those remaining beta cells? Could those highs have pushed him out of the honeymoon?
I felt horribly responsible. If I'd just given the folks at camp more instructions, then maybe he'd still have something. He wouldn't be completely diabetic. I know, I know. Just as it's impossible to be "a little bit pregnant" you really can't be "a little bit diabetic." But I guess part of me still doesn't want to let go of what's left of his islets. I want him to have something. Even if that something can make our lives miserable by adding yet another level of unpredictability to this disease.
Anyhow, just as before, it seems I was wrong about this being "it."
On just our second day back, Joseph crashed in a big way. We were out shopping for new school shoes -- just as we'd been one year earlier, the day he was diagnosed. While sitting on the floor in Famous Footwear, slipping on a pair of Vans, Joseph looked up at me and said "I feel kind of low."
Only it sounded more like he said "I feel kind of slow." Oh.
"Just stay right there" I said as I pulled the meter from my bag, ignoring the inquiring looks of the headset-clad employees who came over to make sure we were "finding everything all right."
Joseph was 37. Good God.
So we remained on the floor as he gobbled down four glucose tabs, and waited. Ten minutes later he was 60. Another two tabs. Another ten minutes. 97.
Okay now. Much better.
We quickly made our purchase, and proceeded to the sub shop in the mall for an early lunch.
After eating we went out and bought him a fishing rod and spinning reel-- like mine. We had done a lot of fishing at the lake, and I thought it would be a nice way to acknowledge the anniversary of his diagnosis-- the fact that we've all come so far, learned so much, and that he's still strong and healthy.
I just wished he hadn't had that low.
Little did I know that it would be the first of many lows he would experience over the next few days-- day and night-- until finally, we would pull his insulin back to where it had been originally (a total daily dose of around 11 units).
Last night, looking for some explanation for what was happening, I pulled out our measuring stick-- the one we've used to mark Joseph's height since he was a toddler.
He'd grown nearly an inch since we measured him last-- just over three weeks ago.