Hanging Out

High High High

Just when you start to believe that everything is gonna be all right, it all goes to hell.

Saturday night. Joseph's sugar spiked to 580. Only after two set changes, two shots, two tests for ketones, and much handwringing-- did his blood sugar come down within the normal range. What caused this nightmare of an all nighter?

You know, there's a saying that it's never really just one thing.

Joseph had a buddy sleep over, so he was extremely amped up before bedtime. He'd eaten 120 grams of pizza for dinner (more than twice the usual amount), and it was takeout from Pizza Hut (which we never get). I thought "that must be why he's so high." His before-bed sugar at 10pm was 463. Good Lord! We corrected, then put him and his friend to bed. I decided to check him again at 11.

That's when he was 580.

Immediately I got him up and had him pee in a cup. No ketones. Bolused another correction, (thinking "goddamn Pizza Hut!") then back to bed. Poor kid was exhausted.

Ryan and I stayed up, waiting an hour to check him again. At midnight he was 575.

All right. There's something terribly wrong here.

The set had to come out. And he needed a shot. Joseph was surprisingly alert when I woke him up and told him that he was still in the 500s and needed a set change. He simply got out of bed and said "I'll pee first and drink a glass of water. That should help me come down."

During this set change we discovered blood in his cannula. "Oh, that explains everything."

We gave him a shot, then continued to check and correct every hour. After three hours, his bg went down to the high 300s. But an hour after that, he was back up into the high 400s. What the hell? No monkeying around. Let's get the damn set out and give him another shot. Before we pulled the set, we had Joseph disconnect. That's when we noticed that the metal part of the connector at the end of his tubing was bent. Jesus Christ.

So we replaced the tubing, checked yet again for ketones (miraculously, none), and continued to check every hour while he slept. He didn't get down below 200 until 8:10 am. Ten hours after we discovered that first ungodly high. Ten. Freaking. Hours. That can't be good.

I really really really hate this disease.

Overnight Camp

Okay, so earlier this evening I took my 2 1/2 -yr old daughter Evan out to the School Forest where Joseph is camping overnight with his classmates, teachers, and several parent chaperones. Ryan is, of course, among the chaperones. Evan and I were to join all of these kids in the woods for dinner and a campfire. I was glad for the invitation, as this field trip had me more than a little nervous.

Earlier in the day, when Ryan called on his cell phone during their nature walk, he had said simply, "Joseph just tanked."

"What? "

"His sugar." He paused. "It just tanked."

I could tell he didn't want to give me a number. It's really hard for him. I do so much of the day-to-day. For him to have to manage this under such unusual circumstances was rough. It would have been hard for me.

"He was 54." Holy shit. In the middle of a forest.

Then Ryan said, "But he came back up pretty fast."

"Yeah?"

"I think we over treated."

"What do you mean?" I felt my jaw begin to clench, and that awful, familiar sensation in the pit of my stomach. Like I'm riding a rollercoaster. Or just about to.

"Well, he was 266 about a half hour later."

"Okay."

"Yeah. I gave him three glucose tablets. Then a cup of Chex Mix."

Way too much Chex Mix. But man, this is so hard.

"It's all right. He'll be traipsing around in the woods all afternoon," I said, trying to keep myself from worrying too much about these fluctuations.

Sure enough, an hour after this high, and for the rest of the afternoon, his blood sugar stayed between 95 and 150-- until I arrived at dinnertime, that is. You see, his teacher took me aside as I walked into the campsite and told me that about a half hour earlier she had noticed Joseph eating potato chips.

A lot of potato chips.

When I asked her if she saw him bolus, she said "No, I didn't see him take out his pump at all."

I found Ryan shortly after this chat, and asked him about the chips. He said he hadn't seen him eating them, but he did see him eating M&Ms -- for which he didn't have Joseph bolus, since he was 95 at that time (an hour earlier).

So Joseph walks up-- and he is totally busted. Though, I don't get too heavy-handed with him-- despite the fact that he's now 234. I just remind him that he's got to bolus if he's gonna eat these things. It's fine to have treats, just cover them with insulin. To his credit, Joseph explains to me that because he was running around so much, he thought the snacks would be covered by the increased exercise. "Mom, I was really active," he told me. And, although it scares me to think that he just ate that stuff without bolusing -- how dangerous that could be -- I couldn't help but feel reassured by the fact that his reasoning was sound. Hell, the kid probably felt miserable when he was 54, and didn't want to risk going there again.

Before dinner Joseph gives himself a correction, and then boluses for his food. While sitting next to him at our picnic table, I begin to take in the surroundings for the first time since my arrival. Just beyond the picnic tables is a large, open, grassy field that seems to sit on a plateau. This is where the kids play ball, frisbee, tag. It's perfect. The field is flanked by 4 rustic cabins. And just behind the cabins, encircling the entire campsite, lies a thick, heavily-wooded forest that slopes steeply downward-- and then goes on for miles.
Pretty damn cool.

With the main course done, everyone heads to the other side of the field -- to the camp fire -- where marshmallows will be roasted, and S'mores devoured. That feeling in my stomach, you know, the one I mentioned earlier. Well, here we go again.

Joseph is way ahead of us. And before I can figure out the carbs for all of the components of a S'more, he's running back shouting "Mom, I know the carbs! It's six for the marshmallow, 11 for the chocolate [they were a bit stingy with the Hershey's], and 11 for the graham cracker." He's right.

Joseph runs back to the fire, triumphantly grabs a stick, firmly plants a marshmallow on the end of it, and joins his buddies around the fire. He's beaming.

And so am I.