On the Eve of Camp

Finally.

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.

"Yes?"

"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...

Let's Not Forget Diabetes Camp

Taking a seat in the common room, opposite Joseph's cabin nurse -- a woman with wavy brown hair who looks to be about my age -- I'm not nervous at all.

Determined, is more like it.

We start out talking about basal rates and insulin-to-carb ratios; corrections and the timing of set changes.

And then, I take a deep breath.

"Now, I'm sure you're aware that Joseph needs to be checked at both midnight and 2am. I spoke with the camp director about this a couple of months ago. Also, Joseph's endocrinologist sent a letter outlining the reasons why he needs to be checked... "

Her head tilts to one side; her mouth opens slightly.

And then-- a look of confusion.

"Did you see the letter from his doctor?" I ask.

"No, I didn't... but we can see how he's doing," she says with a pleasant smile, "I'm sure the camp doctor will be able to- "

"I'm afraid that's not gonna work-- you see, each of the last three years
I was assured that Joseph would be checked. And each year that hasn't happened. When I asked about this last year, I was told that the camp doctor overrode my son's doctor's orders because Joseph's blood sugars were 'in range' before he went to bed."

"Well, that's a good indication of- "

"No, I'm afraid it's not. At Joseph's last office visit his endocrinologist said specifically that if Joseph isn't checked overnight at camp he will have a seizure."

"I'm sure he would wake up- "

"Two nights ago, my son went to bed with an 'in-range' BG-- four hours later he was 52. We fed him glucose tablets and a snack-- he slept through it all."

"Oh... well that's... unusual. But I'm sure it's something he'll outgrow-- I mean once he's through puberty."

"I hope you're right-- but in the meantime, he needs to be checked."

An awkward silence, and then...

"Maybe you should speak with the camp doctor about this."

"I would absolutely love to speak with the camp doctor."

Minutes later, the endocrinologist responsible for the camp steps into the cabin. And before I can say anything, he tells me that the camp director spoke with him about Joseph earlier this morning.

"That's great," I say. And then I proceed to reiterate exactly why Joseph needs these overnight checks.

"We can certainly check him." he says. "A lot of parents make this request and it's just not necessary."

Huh.

"Can you tell me-- did you receive a letter from Joseph's doctor?" I ask him.

"No, I don't recall seeing one."

Hmmm.

"But testing his blood sugar shouldn't be a problem," the doc continues, "our people will be doing rounds at midnight and 2am anyway."

And with those words -- finally -- I know that Joseph will be okay.

Before leaving the room, I shake the doctor's hand-- and thank him and the nurse for helping to keep our son safe, emphasizing how much coming to this camp means to him.

I then make my way down down the hall to the next room-- where Ryan stands watching Joseph unpack his duffel.

Already the kid is yuckin' it up with his counselor and some of the other boys-- every once in a while looking over at the door to see if Tommy has arrived.

"Well-- he's all set," I tell Ryan.

He turns and gives me a questioning look-- to which I respond with a smile and a nod.

"Hey Bud," I call out, "we're leaving-- is that all right?"

"Yeah, sure-- I'll see you Friday," he calls back without looking up.

But immediately after we leave the room, Joseph leaps out into the hallway and gives us both a huge hug.

"Thanks, Bud," I say.

"Mom, this year's gonna be great, I just know it," he says with a grin that slays me.

"Oh yes, I know it too."

So... Camp

For a moment, I look out across grass and trees and paths that lead to one-story camp buildings and cabins, and -- turning upward -- at a sky so perfectly blue that it doesn't seem real.

Then I walk forward and hand my "receipt" to the young blonde woman sitting at the check-in table just inside the campground.

"I'm here to pick-up my son," I say-- feeling both excited that I'm finally going to see him and nervous that something might have gone wrong.

"Terrific! Here you go," she says, handing back a piece of paper. "Just give this to his camp counselor, and you'll be all set."

I thank her, walk forward a few steps, and notice half a dozen tables set up in the grass just beyond the entrance.

Tables covered with swag.

Brightly-colored toys, bracelets, and bags; shiny-new One-Touch Mini glucose meters (in three new colors!), and stacks of white boxes containing Accu-Chek Multiclix lancet devices.

Whoa.

Without hesitation, I make a beeline to the Accu-Chek table and snag a free Multiclix before making my way to the far side of the camp-- to Joseph's cabin.

Strange... I don't see any other parents roaming around... hmmm... I know it said checkout was at 9am.

When I reach Joseph's cabin, I hear loud voices, whooping and laughter, but immediately after I open the door-- nothing.

"And the crowd... goes silent," I say with a grin, as I step into the room.

And then I notice the slightly disappointed look on my son's face.

"Ahh... hey, I can come back in a little while. I haven't even looked at the lake ye- "

"No, no, Mom-- that's okay, you can come in," Joseph tells me with a smile that says he's glad to see me.

"Yeah, yeah," say a number of boys, who are now smiling too, "c'mon in."

And then everyone is talking at once.

"We got the award for catching the most fish!" yells a dark-haired boy with large blue eyes, before dropping to the floor -- into a perfect lotus position -- and proceeding to "walk" around the cabin on his knee caps.

"Mom, I got the comedy award," Joseph says at the same time, "And I swam every day- oh, and you should have seen me in the mud pit-- I was completely covered in mud! And Tommy lost his shoes in there-- Mom, it was awesome!"

"Yeah, the mud pit was so cool," adds a tall, curly-haired boy, "I popped my knee caps like three times!"

Then several boys shout in unison: "Listen to this!"

Suddenly, I'm surrounded by eight adolescent boys -- my son included -- cracking knuckles, toes, elbows-- and God knows what else.

"Impressive..." I say, nodding and smiling at them all.

"Look- look at this," a boy with shaggy brown hair calls out, as he holds up his right hand and bends his finger tips so that they're perpendicular to his fingers.

"Ah yes, that is cool-- no doubt," I tell him, "but can you do this?"

And then I show them all my trick left thumb-- spinning and bending the thing at impossible angles.

"Wow... " they all cry, eyes wide.

"Excuse me," the boy's counselor interrupts -- my thumb in mid-spin -- "if you'd like to speak with the cabin nurse, she's ready for you in the common room."

I'd almost forgotten.

Almost.

And so I return to the big comfy chair-- again sitting across from that kindly grandmother, her blue eyes bright and shining.

"Oh, Joseph had a wonderful week, just wonderful. And he was such a good friend to Tommy."

"Terrific. I'm so glad," I say.

Silently praying that his sugars were just as wonderful.

"Now, Joseph had some highs," the nurse begins, "and last night he was very high," she continues, sliding his log sheet across the table.

"HI."

That's the first thing I see.

I swallow down hard, then look at the rest of it.

478 at 9pm, and 1.85 units of insulin; then HI at 11pm-- when he got a set change and 3 units of insulin via syringe.

Dang, that's a lot of insulin!

An hour later his blood sugar was 289.

He'd dropped over 300 points, and his 11 o'clock correction had not even peaked.

They didn't check him again until 8am.

No 2:30 check.

I quickly scan the rest of the log.

Not one check after midnight during the whole week.

Not one.

And immediately I see the pattern-- meal boluses, snack boluses, corrections-- all stacking before bedtime.

Midnight blood sugars that alone seem fine, but if looked at alongside the highs at bedtime show a dramatic downward trend.

And then, morning highs-- rebound highs from overnight lows.

The Somogyi Effect.

Damn.

"But why wasn't he checked at 2:30-- like we talked about on Sunday?"

"Oh dear--well, the camp doctor felt that it wasn't necessary-- and you see, Joseph did just fine."

Yes, he did, but my God-- what could have happened?

I keep it together-- resolving to speak with the camp doctor before next year.

To make this work.

And then I rejoin the boys.


Just in time to referee a game of "hot potato."

Back To Diabetes Camp

We got home late Thursday night.

And as much as I'd love to tell you all about the road trip, I'm gonna have to save that for the next post (maybe the next two posts-- because really, it was that good).

In the meantime, we're back in the van, driving the two (relatively) short hours to diabetes camp-- Harry Potter and the Deathly Hallows wide open on my lap.

Still hoarse from reading aloud 524 pages during the long ride home from Massachusetts-- I'm back at it.

You see, we'd love to finish the book before Joseph gets to camp -- where someone is bound to have read it.

Probably several someones.

Kids.

Who like to talk.

But there's just no way-- we've got over 200 pages to go.

Still, I keep reading. The book is awesome, and it helps keep my mind off of what happened last night...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Joseph goes to a birthday party.

He eats a burger, tater tots; cake and candy.

He gives himself three boluses of insulin in two hours.

Later, just after midnight, his blood sugar is 80.

Nothing scary there.

Except that he's dropped almost a hundred points in an hour.

Three glucose tablets.

And then, a little Potter while we wait for the sugar to stop the slide.

Only it doesn't.

Fifteen minutes later, we check again.

48.

Damn!

"Another three, Bud?"

"No-- four," he says.

Quickly, he crunches away at the large tabs.

Then, oblivious to the dusting of sugary powder on his lips and chin, he asks in a small voice:

"Mom, can I lay next to you?"

"Sure."

So I let him climb into bed between me and Ryan while I continue reading aloud. His head rests heavily on my shoulder. And I can't seem to get my mouth around the words in front of me.

I keep messing up.

After a few minutes, I stop reading altogether.

"Honey, do you feel like you're coming up?"

"No... not really... Mom, just keep reading."

What if he doesn't come up? What if...

But thankfully -- eventually -- he does.

Thirty-five minutes and seven glucose tabs after that first check, he bounces up to 118.

He's okay.

But that doesn't stop my mind from racing.

What if this happens at camp-- and, my God, what if they don't catch it?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

So here I am the next morning, sitting in the van-- reading again.

Trying very hard to stay calm.

It helps that Joseph is so relaxed, so happy to be returning to camp for the third time.

I keep this in mind when later I'm seated in a large, comfortable chair opposite Joseph's cabin nurse-- a kind-looking, older woman with snowy white hair and brilliant blue eyes.

She tells me her grandson has type 1.

"Is he here-- at camp?" I ask.

"Yes," she says, eyes sparkling, "oh- but he's in another cabin."

Then we talk about Joseph-- I explain that he needs to be checked overnight, showing her the letter from his doctor.

"Well, actually, the camp director thought that checking him at midnight would be enough- "

"No," I say quickly, "that won't be enough-- he's got to be checked at least twice. Joseph can go to bed with a stable sugar-- even a high sugar -- and crash in the middle of the night. And he never feels it when he's sleeping. Never. And if he goes high, someone needs to get him up to use the bathroom."

I try to keep my voice steady-- not to panic.

"I see... well... " and then she lowers her voice, continuing in an almost conspiratorial tone, "Joseph's nurse from last year spoke with me about him this morning, and well, she thought it best we check him at midnight, then just come around and check him again at 2:30-- do you think that would be all right?"

"Yes- yes-- that would be great," I tell her, not even attempting to hide my relief.

"I understand," she says, giving my hand several pats. "He'll be fine. Just fine."

And for a few minutes, I'm sure she's right-- but then I remember what we were told at check in: that all of Joseph's cabin mates from the previous two summers were assigned to a different cabin.

He would be starting fresh-- meeting his bunk mates for the first time.

Well, all except one.

Standing in the doorway, I see that he's chosen the bunk next his friend's-- the boy he'd encouraged to come to camp for the very first time.

Tommy.

"Hey, I brought a ton of clothes-- probably overpacked," Tommy calls to Joseph-- as he hoists a large, bulging duffel bag onto his bunk.

"Me too," says Joseph with a reassuring smile, while struggling to unzip his own tightly packed duffel.

Moments later, the two boys head down to the lake.

"Do they have basketball here?" Tommy asks.

"Nah, but they have a mud pit," Joseph tells him.

They walk on -- away from me and Ryan and Evan.

The whole time, talking and laughing.




About what, I can only guess.

The Lowdown on Camp

As Ryan and I enter Joseph's cabin, we're greeted with the sight of many boys talking, laughing, stuffing their clothes into duffles, and messing with funky colored balls, little electric fans, light-up necklaces, etc... All labeled with some diabetes-related sponsor's name -- camp swag.

And there is Joseph, his back to us, standing half a dozen bunks away. I watch him for a few moments-- joking around with two other campers, and checking out the trinkets he has spread on top of his bunk. I look for signs that things might not have gone well.

So far (thank God)-- nothing.

He finally turns around and sees us, runs across the room and throws his arms around me-- for a moment, we hold each other tight.

I'm trying hard not to lose it-- after all, I don't want to embarrass the kid.

He looks up at me and says, "I missed you," then walks the two of us over to his bunk and continues to pack. He looks as though he's anxious to tell us something, but for a while says nothing. He just keeps fiddling with a bright blue, purple and red ball that lights up every time he whacks it with his hand.

I watch him carefully, bracing myself. And then he lifts his head, looking from Ryan to me.

"Guess what?" he asks, with a huge grin.

"What?"

"I got asked out on a date."

The boy just cannot stop smiling.

"Reeeally." I say.

"Yeah, the girl who said I was cute last year-- she asked me to the dance."

More smiles.

"And we danced."

"Oh, reeally."

"Oh Yeah," he says, nodding and smiling even bigger than I thought possible.

"And Mom, I think she's 12."

"Oh. My. God."

I breathe a sigh of relief.

"Oh, and Mom-- " he says, giving me a meaningful look, then mouthing the words through yet another smile:

"I didn't have any accidents."

Thank. God.

"All righty then, let's get you packed."

As we pick up his clothes, and try to collect his booty (he keeps wanting to play with each thing before we put it in his bag), Joseph tells us about camp: about the paddleboat sponge fight and water dodgeball; about learning how to kayak ("it's a lot harder than it looks"); catching frogs (he caught several!); and of course, his time in the mud pit ("It was gross, Mom. It smelled really, really bad-- but it was awesome!").

Oh yes this was good for him-- very, very good.

But then, he says -- almost nonchalantly -- "And one night, I was really high-- like higher than I've ever been."

I stop packing.

"What do you mean, bud?"

"Well, I had them check me 'cause I didn't feel right and the meter said 'HI' -- and they said that meant I was like over 600!"

"What?!"

"But my set was bad," he says quickly, "I could tell because my cannula was sticking out."

"Did you have any ketones?" I ask, breath held.

"Nah."

Okay, he was fine. Just fine.

But as we continue packing, I struggle to keep a growing fear in check.

What if something awful happened again? But the 'HI' was just a bad set-- a fluke, really.

It had to be.

Just then, Joseph's very friendly and rather burly counselor comes over and says the nurse is ready for me.

Before I even sit down, she is telling me that things went very well.

"Joseph's sugars were really good this week, and he had no nighttime accidents," she says smiling brightly.

"Yes, Joseph told me-- that's wonderful. But he did mention that he'd had one very high blood sugar-- that the meter had said 'HI' -- we've never seen that before."

"Yes, we had to change his site that evening," she says, her smile beginning to fade. "Well, uh . . . let's have a look at the log."

She pulls a sheet of paper from Joseph's file, and slides it in front of me.

"Now we did several set changes-- we always like to do them when the kids have been in the mud pit, and then we had that bad set."

I'm listening to her, nodding-- while looking very carefully at the log. Those first two days were awesome. But it was on that second night that he went 'HI' and stayed that way for several hours . . .

I look at that for a long moment.

On the third night, he was 246 at bedtime-- they gave him a snack and a bolus (with a correction-- despite the fact that his combo bolus for his dinner had just finished). At midnight he was 120-- they never did the 2:30 AM check. At 10 AM, he was 367.

A rebound high.

The fourth night they'd given him a snack and over a unit of insulin at 9pm-- just three hours after a large meal bolus with a correction. There were no nighttime checks that night (though they did get him up to use the bathroom). And he was 356 by 10 AM the next morning.

Another rebound.

The fifth and final night saw a 425 at bedtime.

"He had no ketones throughout the week," she says-- obviously noting the concern on my face as I stare at the number.

And, as my finger moves from the "Blood Glucose" box down to the "Correction Bolus" box, the nurse tells me:

"Oh, and Doctor D overrode the pump's recommended correction that night because Joseph was so high." In the bolus box I see a .5 crossed out and a full unit written over it. I also see that Joseph clearly still had insulin on board from a very large dinner bolus.

He was 96 by midnight-- having dropped 329 points in three hours. When they checked him two and a half hours later, he was 135 and climbing -- by 7am he was 254.

Man.

"I'm really thinkin' that there were several rebound highs this week-- that he may have had a number of low blood sugars that were not picked up overnight. I mean, those morning highs are kind of unusual."

"You mean from the Somogyi effect?" she asks with a look of sudden understanding.

"Yes, that's exactly what I mean."

"Well, yes . . . you might be right . . . I'm sorry. There were a couple of nights in there when he wasn't checked as often-- when I wasn't on duty, and well, they just followed the usual protocol."

"I see," I respond quietly.

About 20 minutes later, Joseph is packed and we're ready to head home. We take one last look at the lake, still and shimmering under a perfect, clear sky. Then we make our way to the parking lot-- Joseph saying goodbyes and talking the whole time about the dance, the girl who asked him to it, and how much better camp was this year than last.

Despite the things that didn't go right, it's obvious this experience meant a great deal to him. And really, it's hard not to feel good about something that so clearly makes your child happy.

But still, as we drive away I'm thinking again about those rebound highs-- the lows they imply -- and how to avoid them next year.

The Road to Camp

"Are you nervous, bud?"

"Nah, not really."

"Excited?"

"Well, yeah. But I'm trying not to be. I want to save it up for tomorrow."

That was what Joseph said the night before his return to diabetes camp-- where last summer he'd gone swimming, boating, fishing, and played all manner of outdoor games with kids like him.

Kids who understood intimately what it was like living with diabetes.

Yes, it was awesome.

But, while Joseph could barely contain his excitement, I fought hard to stifle my anxiety.

You see, every time I thought about him at camp, I remembered the not-so-great things about last year's experience-- the out-of-control highs, the overnight accidents he kept hidden from his counselors and bunk mates.

Those painful blood sugar "shout outs" during which his numbers were always the highest.

And on that first day home-- his desire to abandon pumping and return to shots.

All of this happened in part because we pulled back his insulin dosages to avoid sending him low after the many camp activities-- and, because we assumed the camp doctor would make dosage changes if necessary.

Sadly, this turned out to be a bad assumption.

"Mom, do ya think I'll have some of the same kids in my cabin?" Joseph asks, as we pull into the camp parking lot just a couple of minutes past our scheduled drop-off time.

"Probably."

Man, I sure hope so . . . I didn't look into that. Hmmm. And dang it, we're gonna be late.

I look at Ryan, and right away he knows what I'm thinking.

I really want to spend some time with these people.

"It's probably not a bad thing if you're not the first person to meet with the medical folks in his cabin," he says with a smile that's both reassuring-- and slightly mischievous.

I don't get his meaning at first. But then, he continues:

"I mean, it's good they'll get the chance to warm up some before sitting down with you."

"What? Do you think I'm gonna be more of a challenge for these people?"

Now he's smiling broadly-- "Oh, Yeah."

And now I'm smiling too. The man knows me well.

Less than half an hour after our arrival, we're in Joseph's cabin-- and already, he's hangin' with his buds (two of which were in his cabin last year) choosing his bunk, and unpacking his gear. Ryan and Evan help him, while I take a seat in the common room opposite the nurse assigned to the cabin.

We review Joseph's basal rates, his insulin-to-carb ratios, and his meal plan.

"I guess we're all set then," she says with a smile, as she begins to close Joseph's folder.

"Actually, not just yet."

I take a deep breath.

"Now, because Joseph has a history of severe nocturnal hypoglycemia and nocturnal enuresis, he's gonna need to be checked at midnight and 2:30 AM-- every night. His endocrinologist put this information on Joseph's medical form and in a separate letter. And, I really just want to make sure that these checks happen."

She looks at me a moment.

"Well, we'll check him in the beginning and see how it goes, because often it's not necessar- "

"No, I'm afraid it is very necessary. Last year, Joseph wet the bed every night.

Every. Night.

Prior to coming to camp, he hadn't had an accident overnight in months. And when it did happen at home, it was always because he'd had a sustained high blood sugar overnight."

"Well yes, but-- "

"And just last night, he experienced a hypo that kept him low -- despite repeated treatment -- for over half an hour. "

I pulled out Joseph's log and showed her the graph. Suddenly, she looked very concerned.

"Okay, this sounds like we need to make sure we check him. Some parents come in and tell us that they'd just like us to do the overnight checks and really, it's not necessary, but this is different."

At these words, the knot in my stomach -- almost miraculously -- begins to loosen.

It'll be all right this time.

For the next several minutes we review the sliding scale that Ryan and I put together for treating highs and lows overnight. When we're done, the nurse looks up at me and asks:

"Would it help if we got him up to use the bathroom at midnight? There are actually five other boys who wet the bed in this cabin alone. Their parents simply ask that we wake them to urinate at midnight . . . Hmmm . . . I wonder if it's because of high blood sugars for them as well. Though, it's probably just bed-wetting. Two of my brothers had that problem."

"Still, five seems like a lot of kids," I say. "It's hard not to think that it could be diabetes-related, don'tcha think? I mean, Joseph's endocrinologist has told me -- and I've read -- that this is a very common issue among diabetic children."

"Hmmm . . . Maybe."

Soon, I relinquish my seat to a another smiling, slightly nervous parent, and then I'm back in the next room with Joseph.

He is unpacked, and beaming.

Taking him aside, I quietly tell him that five other boys in the cabin will be getting up at midnight to use the bathroom-- and they'll wake him up, too.

"This is gonna be so much better than last year, Mom," he says, with an unmistakable look of relief.

"Hey bud, let's go down to the lake and check out the water before we leave."

Moments later, we're standing by a very still, very beautiful lake that is just one long set of wooden stairs below Joseph's hilltop cabin. Almost immediately, we spot a small frog between some tall reeds at the water's edge.

And Joseph almost catches it.

"That kid is gonna be catching frogs all week," Ryan says, as I stand next to him waiting (but not really wanting) to say goodbye.

Finally, Joseph asks if he can rejoin his friends in the cabin. We smile and tell him, "Sure." He gives us each a quick hug before bounding up those wooden steps-- two at a time.

Never looking back.

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.

Diabetes Camp

I'm feeling a bit lost this morning. Joseph's been at camp since Sunday afternoon, and I won't see him until Friday.

He's more than a hundred miles away right now.

You know, this would have been kind of tough for me even if he didn't have diabetes. After all, it's the first time he's been away for more than one night. His only other camp experience was at the school forest. And even then, his dad was one of the chaperones.

Some of you might wonder how he did when we left him. Was there anxiety about the fact that he wouldn't know a soul at camp? Had there been a long, tearful goodbye?

Well, not exactly.

During the drive to the camp site, Joseph, who had been quietly listening to Barenaked Ladies on his cd player for some time, suddenly interrupted Ryan and me as we talked about how wonderful this experience was going to be for him.

"Mom, I really wish we hadn't gone to the newly-diagnosed camp last October."

"Why is that, honey?" I asked, thinking "here it comes, finally, he's going to say something like 'then we wouldn't have found out about the summer camp'."

"Because then this would all be new."

Oh.

"Well darlin' there'll be plenty of new things. Many more kids. Many, many more activities. You'll get to actually SWIM in the lake instead of just looking at it. There's a mud pit, archery, kayaking, boating, climbing wall, campfires... tons of things."

"Yeah, it's gonna be great!" Joseph replied with gusto.

Who is this boy? This child who nursed for two years. The one who slept in our room for so long (and still does every so often when he's feeling scared).

Well, we'll see what happens when we get to camp.

So we got to camp, and he was high. Very high. Like 349. Yikes! And he hadn't even had lunch yet. Since we got there 30 minutes before check-in was to begin (a process that would take two hours), I figured we had time to bring him down. Half an hour after correcting, almost no change. The set had to come out. We'd just put it in before leaving for camp. Tubing looked good, but I couldn't take any chances. Even though I knew that the persistent high was more likely due to the sweet cereal he'd had at gramma's (where we'd spent the night, since she lives about 45 minutes from the camp site), and an adrenaline surge from all the excitement.

Joseph was not happy about being high. In fact, he was very angry about it. In a tearful voice he said "Mom, why did this have to happen? I don't want to be so high. Can I just rip out the set?" He seemed very self-conscious, scanning the crowd around us as he said these things.

"Don't worry. This will just take a couple of minutes." I don't think he was truly cognizant of the fact that the majority of the people waiting with us in that ungodly heat, huddled under the shade of a tree, would understand exactly what we were doing and why. There were a number of nods and knowing smiles as I ushered Joseph into a nearby camp building to wash our hands and change out the set.

Within the hour his sugar came down, and we embarked on our visit to each check-in station. Joseph was assigned to the "Explorers" cabin. He compared the experience to that of the students at Hogwarts being assigned to their "House" by the sorting hat in Harry Potter. "Cool," I thought.

Next up was a visit to the Health building to review Joseph's general health, then on to his cabin to unpack and to discuss the specifics of Joseph's diabetes care with the doctor assigned to "Explorers."

As we walked to his cabin, Ryan whispered "this is the meeting that is really going to put you at ease about all of this."

What? What did he mean by that? Then I realized that I'd been clenching my teeth at every station. I knew this would be great for him, but still, how could I leave my son in the care of strangers? Even the docs at his clinic deferred to my judgement about Joseph's bolus and basal rates. Often I made changes on the fly. By feel. How could they really take good care of him?

Ryan was right. Joseph and I sat in front of a doc and his assistant. Reviewed his basal rates and insulin-to-carb ratios (both of which I pulled back considerably given the high activity level at camp), discussed corrections, looked over his pump. That's when they told us that, for the camp duration, Animas, the maker of Joseph's pump, actually had a CDE and two reps on site. They also informed me that, in addition to the many checks throughout the day, blood sugars are checked at 12:30 am and 2:30 am. When the kids are in the water, there are a number of rescue boats with nurses on board there as well. Children need only raise their hand if feeling low, and they will be checked immediately.

This. Place. Is. AWESOME.

With check-in complete, Joseph immediately introduced himself to his bunk mate (a boy who, his parents confided, did not want to even get in their van that morning because he wouldn't know anyone at camp).

"Hey, you wanna play catch?" Joseph asked. As they tossed the ball to each other in the common room, a third boy shyly walked over. Joseph stepped back and said "we have room for three." Then he asked both boys, "Do you play baseball? Any little league?" He told one of them "hey, you throw like a pitcher, I bet that was your position."

I asked Ryan, "Should we go now?"

"I guess so."

Just as we were leaving, the three boys had abandoned their indoor game of catch and were now pouring over a large container of toys. I called out "Hey Joseph, we're going now."

He looked up from the floor and said "Okay. Bye mom." Then continued yuckin' it up with his new friends. I looked at Ryan, and just stood there a moment, at a loss. Then, as I turned to leave, I suddenly felt Joseph's arms wrapped around my waist. He smiled up at me and quickly said "I love you mom. And I'm fine. This hug's for you." Then he ran back to his buddies.

We haven't spoken since. I miss him very much. But I am trying to enjoy this break from diabetes management. It's so strange. I never realized just how much I thought about his diabetes care until now. Yesterday I went on a 20-mile bike ride with Evan. We rode along a creek, then a large lake. Stopped to watch a duck and her charges cross a river; sat and talked about fish and birds. Then we had lunch, and never pulled out the Calorie King, never thought about the timing of the meal, the postprandial sugar...

It was wonderful.

And because it was so nice, it makes me sad to think that, until a cure is found, Joseph will never have a break like this. Never be able to just eat without thinking about the carbs. Not be wary of the possible high or low.

But you know, he does have this camp. It's probably the closest thing to a real break he'll have for a while. And it is pretty damn fantastic.

Needless to say, I'm already thinking about camp for next year...