Thursday, August 06, 2009

On the Eve of Camp


The piles of folded clothes that covered the dining room table are packed tightly into Joseph's large blue duffel-- along with sunscreen, bug spray, goggles, sneakers, flip flops...

Everything my boy will need for a week at camp.

And next to that duffel is a medium-sized black suitcase packed neatly with dresses, shirts, skirts and "skorts" -- along with no less than six "buddies" from Evan's vast collection of stuffed creatures. Everything she'll need for "Gramma" camp.

Yep, they're both ready.

It's not that late -- only quarter til nine -- but I'm beat. So much traveling lately, and Joseph's baseball games, and work...

I just want to sit down and breathe.

"Kids, why don't you get ready for bed? It's gonna be a long drive tomorrow and we all have to get up early."

Joseph and Evan head upstairs to change, chatting away about what they'll be doing "this time tomorrow."

That's when the phone rings.

I don't recognize the number on caller id and there's no name, so I decide not to answer it. But then, since I'm standing right there I pick it up anyway.

"Hello-- Sandy?" a woman's voice says on the other end.

"Yes... " I say, fully expecting a telemarketer-- who else would call me "Sandy"?

"I'm the program director at Joseph's diabetes camp."

My stomach drops.

And, I'm confused, because this isn't N-- the program director who has been running the camp since before Joseph started going.


"We were looking over Joseph's camp forms and saw that you requested his blood glucose be checked at midnight and 2am... I wanted to clarify our protocol for putting children on the night rounds. We only check those children whose blood glucose is 80 or less before bed time."

"What? Hold on, this isn't what was done last year. I included a letter from Joseph's diabetes physician, it explains why he needs to be checked- "

"Yes, we saw the letter. That's why we're calling. With so many children coming to camp, we can't possibly do anything outside of our protocol."

I start to shake.

This can't be happening. Not the night before.

"But I spoke with the camp doctor last year. Joseph was checked every night... wait, your calling me on a Saturday night -- the NIGHT before camp -- to tell me this! This is insane!"

"I'm sorry, but- "

"I need to speak with the camp doctor."

"All right, I'll go get him."

For two long minutes, I wait-- the phone pressed so hard against my ear it hurts.

When the camp doc finally comes to the phone, he repeats almost verbatim what the program director just said.

"I don't understand-- you agreed last year. He was checked- "

"No, I think you must be mistaken. I probably had him checked the first night, but then we followed our protocol."

"But I have the logs- he was checked!" Suddenly I'm wishing I could find the logs right now, but I can't even think straight. "You met with me in his cabin. You agreed- "

"I'm sorry, but it sounds like your son might be too fragile for camp."

"What?! He is not fragile-- not at all! What are you talking about?"

"The letter from his physician states that he has 'a history of extreme glucose fluctuations overnight' and 'unexpected overnight hypoglycemia which must be detected to prevent seizure activity.'"

"But he's never had a seizure!"

"The letter asks that we treat glucoses less than 100 at midnight and 2am. I'm afraid that isn't our protocol."

"Are you saying that you don't want my son to come to camp because of something he can't help? That even though you have people doing night rounds anyway, you won't let them check my son? And you're telling me this the NIGHT BEFORE camp?"

Then, through tears I tell him what this camp means to Joseph and plead with him to reconsider-- reminding him several times that this wasn't a problem last year.

"If you can agree to follow our protocol, then there won't be a problem."

There's nothing I can do-- not this late! He has to go...

"All right," I say, wanting to fight -- but knowing that if I do, they might not let him come.

"We'll pull back his basal rates, insulin-to-carb ratios and his sensitivity factor even further. We'll make it work," I say, half to myself, as a new plan begins formulating in my brain.

Then, after nearly an hour on the phone, I hang up-- feeling more drained than I have in a very long time.

Moments later I'm leaning back against the kitchen counter, explaining everything to Ryan. "Joseph needs to know about this," I say, torn -- because camp is a place where my son has always felt safe. I don't want to take that away from him.

But he has to know.

"Bud," I say, sitting down with him on the couch, "when you go to camp, they may not check you overnight."

"What do you mean?" he asks looking confused.

"Only if your sugar is 80 or less before bed."

"But that's stupid! What if I have insulin on board and I'm falling fast?"

"Listen, we're pulling everything back. Basals, insulin-to-carb ratios... and you'll eat a snack before bed with no bolus, all right? We need to be careful about stacking... "

I pause a moment to look at his face, to make sure he's with me.

He looks calm. Confident, even.

" ... now, you're probably gonna run high overnight, and will likely wake up on the high side as well, but it's just a week... Bud, I want you to have fun and not worry, okay?"

Suddenly, he takes hold of my shoulders and looks straight into my eyes.

"Mom, it's gonna be fine. We can do this."

So the next morning we bring my boy to diabetes camp for the fifth time.

to be continued...


Penny said...

Sandra, I'm in tears. The more I read the angrier I got. I can't believe that a diabetes camp refuses to check sugars overnight.

I understand where you're coming from. Riley's sugars fluctuate too much at night not to check them a couple of times.

It's a shame you have to let him run on the higher side just so he can go to camp.

Oh, it just makes me so angry !!!

OK, now that I've got that out of my system.... I know Joseph is going to have a great time. This will be my fifth year reading about his camping adventures. I can't wait to hear about all the fun he's going to have this year.

I know how hard it must be to let him go knowing he won't be checked at night. You made the right decision to let him go. (((big hug)))

Penny said...

Ok, just read your post before this one and found out Joseph has already been to camp. Still can't wait to hear about it.

Sandra Miller said...

Thanks, Penny.

You know, we always scale back his insulin doses for camp-- knowing he may run a little high. Even so, he's still had some lows there overnight.

You just can't predict how much activity will bring down his sugars later...

But there was no way he was going to miss this. It means too damn much to him.

Finally sitting down, spewing this out brought me to tears all over again. Even though this happened almost two weeks ago (we picked Joseph up from camp this past weekend).

I promise I'll fill you in on the camp experience itself. Would have done so here, but this post is already pretty long.

Major Bedhead said...

What camp is this? I can't believe they'd talk to you that way and wait so long before contacting you about it. Gah.

Bernard said...

Words fail me. The whole idea of camp is to let the kids live a close to normal life. If they can't do this they need more staff. I cannot believe they'd not consider the cost and challenges involved if Joseph had an overnight low/seizure. How could that possibly help anyone.

Sandra, you're amazing. I'm glad he went. I would have been fit to scream.

Scott said...

I think you should consider filing a small claims lawsuit in your local small claims court (if the defendant doesn't show up, cases are typically automatically ruled in favor of the plaintiff) and request a refund for "stress and anxiety caused by failure to act in accordance with agreed-upon treatment protocols and not notifying us until the day before" ... of course, this assumes he won't be going to the same camp next year (which may be worth considering anyway)!

Sandra Miller said...

Julia -

The woman who normally oversees the camp fell ill and had to have surgery during camp week.

I don't think this would have happened -- at least not like this -- otherwise.

Bernard -

I WAS fit to scream.

They seem to have the staff-- but the camp doctor has always had a different philosophy about managing diabetes in kids than ours and Joseph's endo's (at least that's what she's told me).

I thought we'd made a breakthrough last year when I got to speak with him face-to-face.

Clearly, I was wrong.

Scott -

Here's the thing. Going to this camp has been life-changing for Joseph. He loves the counselors, the camp director, the MANY volunteers he sees there each year.

He's formed bonds with kids he's lived with for that one incredible week of each of the last five years.

Honestly, I don't think Joseph would want to go anywhere else.

Kassie said...

I once had a camper decide not to stay at camp because we couldn't accommodate her request to eat a 2 oz broiled chicken breast for dinner every night. Some things can't be accommodated but a standing order to check a kids' blood sugar could be managed. As a former diabetes camp director, this story breaks my heart!

Val said...

Grr! I think you handled this well. I think I would have dropped more than a few f-bombs into that conversation. I mean, this is a diabetes camp - don't they understand about checking BGs overnight.

Here's hoping the next update says Joseph had a wonderful time with smooth sailing all week!!!

Colleen said...

How ridiculous! Reguar camp, well, ok. Diabetesb Camp - give me a break. Thank goodness Joseph is old enough to know what he's doing (and smart enough!).

Molly said...

So sorry that the camp wasn't able to follow through with a simple accommodation. I am SHOCKED that they called you the night before about that. Crazy. Really.

If they already are getting kids up for those tests (as they are--I know first hand because I used to do it as a counselor, and needed to wake up as a camper) it makes no sense not to just get Joseph up along with the others.

I would totally recommend another camp, but understand that Joseph has bonds.

That said, maybe next summer he should bring an alarm clock and set it to get himself up to check. (they have many battery operated alarm clocks) If he is too low to get up, a camper or counselor will hear the alarm and get up to check it out. Just a thought.....

I'm so impressed at his maturity.

Sandra Miller said...

Kassie -

I know, mine too.

Just cannot understand how and why this doc could believe this was the right thing to do.

Val -

Thanks. Oh, I let them know I was angry, upset and unbelievably disappointed that they would do this thing.

I'll try to update by early next week...

Colleen -

Ridiculous, indeed. I don't know what I would have done had he been a lot younger or if this were his first year.

Molly -

Shocked is exactly how I felt then, and still do. Yes, we came up with a new plan. But this whole thing - the timing of it - was just insane. Really, really insane.

Good suggestion on the alarm clock. I'll have to think about how we could do something like that. Campers aren't supposed to bring anything electronic beyond a flashlight-- all d-supplies (except for the pump, sets and cartridges) are provided by the camp...

Scott K. Johnson said...

Wowsers. What a bomb to drop on the eve of camp!

But - you and Joseph did what we with diabetes are SO good at. Rolling with the punches.

Sure, it's not fair, and yes, it sucks, and it was done last year. But - we always figure out a way. Always.

And bravo to him for being so strong and brave! You too!

Anonymous said...

Clara Barton camp did agree to check her at 2 a.m., as well as midnight. The 2 a.m. check was based on midnight number (if lowish, they would recheck). They do not automatically check each child at 2 am and greatly discouraged it. However, I disagreed and they did check her. With the amount of activity these kids get each day, I would think this would be STANDARD procedure. On a day with heavy activity, most parents check (even those who do not normally do so). This is a diabetes camp, it is clearly a dangerous situation and I fear most camps slack off on the 2am testing. I wish she had liked diabetes camp, but she never wanted to go back. I am very happy with the acting camp run all summer here in town and she loves it. P.S. Although we never eat white bread here at home, she camp back from D camp with a penchant for white bread and to this day (three years later) will never even touch the healthier stuff, LOL.

Colleen said...

I am absolutely shocked by this. I have been going to the same camp for 15 years and have never heard of anything this ridiculous! We often get kids whose parents ask us to check in the middle of the night and we ALWAYS do! Heck, half the time we check all the kids in the middle of the night just for our own state of mind. Also, 80 is a ridiculously low blood sugar to use. We usually test again if the kid is under 120 and even sometimes when it's higher. Not to mention this is a TERRIBLE example to be teaching the campers!!

This really upsets me that a camp is instituting such insanely stupid policies that don't teach kids how to properly manage their diabetes. Which is kind of the whole point of camp.