Saturday, August 06, 2005

Home from Camp... Something Unexpected

Joseph is finally home. By the time we picked him up yesterday morning I was about ready to burst with excitement AND curiosity about his adventures at camp.

When we walked into his cabin to check him out, Joseph looked at me, and with a huge grin said excitedly, "You're here!" And almost in the same breath, "Guess what! We found a wolf spider, and it was THIS big [he made a frighteningly large circle with his thumb and forefinger] and it was really hairy!!"

"Great, honey. That's wonderful."

"Oh and this is Bryson. He uses an insulin pen. And you already met Logan. Can we get my bag? They're gonna give us some free stuff."

He shuffled us into the common room where other parents were in various stages of the check-out process. While we waited our turn to review Joseph's sugars with the cabin's doctor, two counselors came up separately to tell me how happy they were to have had "Joe" in their cabin. Both said they hoped Joseph would come back next year.

And both had the same shaved head-- as did two other counselors who were walking about the cabin... Hmmmm. Interesting.

They must have noticed my noticing of the lack of hair, because it was soon explained that the counselors-versus-campers archery contest had ended in a tie. And because the counselors were unable to win the contest, their heads had to be shaved-- by the kids.

These counselors rock.

Anyhow, soon I found myself sitting across from "Doctor Pete," the same doc I'd met at check-in. Almost immediately after I sat down, he slid a piece of paper in front of me and quietly said, "Joseph ran a bit high this week... all the adrenaline... extra snacks. We stayed pretty conservative with his insulin though... we just left things the way you had them set up on Sunday." As the doctor said these things I scanned Joseph's log. He was in the mid-to-high 200s almost the entire time. Oh God. And in the high 300s twice. Damn!

I agreed that we did rather he ran high than risk a serious low (just one week before camp he'd had a number of lows-- one 47 and several in the 50s). But still, I didn't tell him that those high numbers were really unsettling. I guess I just assumed they would do more to keep his sugars closer to normal. I thought, "Next year. Next year it'll be different. I'll write up a flow chart for them. Should have done it this time. Well, at least Joseph seems to have had a terrific time... and he's okay."

Moving on, the doctor said that he'd asked each boy in the cabin what they liked best about camp, and then jotted down their responses. This was Joseph's comment:

"I really like this place because I fit in. Everyone here is like me."

I just looked at the man a moment, trying not to lose it. Then I asked:

"So will it be at all difficult to get him into this camp next year?"

During the drive home Joseph told us all about his week. He'd gone swimming, fished, shot arrows, played LaCrosse (How does one play LaCrosse? Who plays Lacrosse? Certainly not I. But this week, my son did), and (dare I say it) discovered that a young female camper thought he was "cute." Fantastic.

"And mom, we got to take a boat out on the lake alone. Well, I mean without any adults. We went out with other kids. And, there were nurses in a rescue boat too. But every day we could go on the lake and do anything we wanted.. like take out rowboats, canoes... fish, swim... for an hour... just us kids. It was awesome!"

It was at about this point that Joseph dropped the bomb.

"So I was thinking that I'd like to try using an insulin pen. Most of the other kids in the cabin use them, and I think they're pretty cool. And besides, I'd like to be able to dose myself if the pump fails."

Now, Joseph did give himself shots shortly after diagnosis, but he never drew up his own insulin or used a pen.

"Honey, don't you think you'll miss your pump?" And that's when it came out.

"Mom, at least with shots you know what you're getting. I mean, dosing with a pump is easier, but you never know if you're really getting the insulin."

That's what this was about. A week of high sugars, with corrections so tentative they barely made a dent.

And that's when I realized that Joseph no longer trusted his insulin pump.

"Honey, I know you were high this week, but I asked them to be pretty conservative with your insulin dosing. I was wrong. And next time we'll know to be more aggressive."

"But mom, I really want to try this."

Deep breath. "Well, we're leaving for vacation on Sunday. Since we'll be staying on a lake, it might be a good opportunity for you to try shots again. Maybe you could do both. You know, have an infusion site, but do shots too." Strange. As I said this, I felt the oddest combination of pride (in my son's desire to take on more responsibility for his care) and abject fear (that he might actually prefer shots over the pump).

"No mom. I just want to do shots. Please. I want to do it all myself."

So yesterday afternoon he drew up insulin for his lunch and, without hesitation, jabbed himself in the belly and injected. He used the pen at dinner (I'd purchased one right before we'd gotten the pump), and gave himself a small dose of Lantus at bedtime. He actually said it was fun to give himself shots... to do everything.

His numbers were great the rest of the afternoon and early evening, but spiked later that night. Crying, he said "I don't want to be high. I've been high all week." And then, through tears, he told me he'd wet the bed every night at camp.

Every night.

"Did you tell anyone?" I asked, with my arms around him.

Wiping his face, he said "Nah. Why would I? I was just so tired of being high. Every morning, everyone would shout out their numbers-- '103!' '110!' '112! -- and I'd have to shout out '236!' I was just so sick of being high!" Then he broke down. We both did.

We did two corrections (.5 and .75 of a unit) with the syringe in two hours. I felt uneasy about this, but he wasn't coming down. Between midnight and 3:30 am he went from 196 to 229 to 86 to 53. Four glucose tabs brought him up to 97. By 7:30 am he was 124, and by then I was about ready to throw every syringe in the house out the window. I just kept thinking that a new set (his cannula was kinked when we removed it yesterday), some fresh insulin in his pump reservoir, and an increased basal rate would have done wonders overnight.

I had promised him that we wouldn't let him stay high overnight, that he wouldn't wet the bed. And he didn't. But it took all night to get him down-- only to have him go too far down.

I hate shots.

And by the time Joseph sat down to breakfast, he did too.

"Mom, I think that going back on shots was a bad idea. I kind of miss my pump."

"I'm glad you want to go back to the pump, but it wasn't a bad idea to want to try something different. "

So after breakfast-- for the first time -- Joseph filled his reservoir, rewound his pump, loaded the cartridge, primed the tubing, and helped with his insertion.

"Mom, I really do love having the pump."

I'm finally finishing this post, at... 5:55 pm. Joseph's had good sugars all afternoon as we pack for our upcoming trip. We'll try the Lantus/pump combination at the lake, to give him a bit more freedom and to try to prevent any crazy highs. And, to let him do something different.

In the meantime, I'm still thinking about his experience at diabetes camp. He's been talking a lot about the fun he had and the friends he made. Joseph very much wants to go back next year, and I can understand why. For the most part, the experience was really, really good.

But it was a little sad, too.


Shannon said...

Wow, that was a major case of live and learn. I would've thought that the camp Dr. would be a little more aggressive about correcting Joseph. And of course I was right with you about being nervous that Joseph would prefer the shots over the pump. I would've done the same thing you did by letting him experience it and hope that he would see what a pain it is to deal with needles.

Thanks for writing all of this. It really gives me insight about what I will be up against when Brendon is ready to go to camp.

Kerri. said...


I went to Clara Barton Camp for Diabetic Girls the year after I was diagnosed, but this was in 1987. Kids weren't wearing insulin pumps. We were all on shots. Sometimes one, more often two, but everyone took a needle. I always imagined what it would be like to go to camp with an insulin pump. Or, more specifically, a wide range of available insulin therapies. For me, camp was active. We ran around. Played. Had water fights. We all tested together (but God forbid if we yelled out our numbers... I think that breeds animosity and competitiveness around an issue that is individual and delicate. I would bring that up to the camp staff.) I've only had the pump as an adult, so it's hard for me to imagine what it's like for a kid at diabetes camp. I admire Joseph, for being strong enough to voice his opinion on insulin pens vs. pumps to you. I admire him for being strong through those days of consistant high blood sugars. I admire him for not being afraid to cry to his family when the burden is a little too heavy. He is an incredible kid. And you, as his mother and nurse and friend, are an incredible woman. Your writing brings me back to when I was a kid at diabetes camp, but you remind me of my own mom in that you want, above all other things, for your kids to be healthy AND happy. There isn't much of a seam between the two.


Thank you for writing this. And give my best to Joseph. I think the world of a little boy I don't even know.

Tekakwitha said...

It's hard to post something thoughtful after Shannon & Kerri have already said everything I thought of! Keep us posted on how the trip to the lake goes with the mix of pump and pen.


Violet said...

Sandra, I hope if I'm ever a mom, I'll be able to let my child grow up with the grace you're offering Joseph. That's quite a gift.

Even though I wasn't diabetic when I was a kid, I can see why Joseph needed to find out what shots would be like. Choosing how to manage one's disease (when the time is right, I mean) is so much more empowering than accepting the status quo, even if the status quo has been well chosen for you by the most loving parent and the most competent medical team. And you can't make informed choices without understanding the options.

So I especially like how Joseph's decision to return to the pump was his own, symbolized by putting in his own set.

Agree with K about the calling out of the numbers. That would be agony for me.

mytime79 said...

So was this the first time that Joseph did his infusion set and settings all by himself?

Camp seems like a good idea. Joseph will grow up knowing that he isn't alone and others are going through exactly what he is going through. I never had that, I guess really until I started blogging with you all.

Maybe the camp has a suggestion box or a comment box where you can suggest against the yelling out of the blood sugars. That seems a little out of place for camp.

Anonymous said...

Wow. Thanks for the incredibly moving and informative post. I've printed it out and stuck it in a drawer so I can find it in 7 years or so. (Please keep your eye rolling to a minimum!)