I wrote this entry late one night during the week before Joseph went to diabetes camp.
Because I was so
stressed out preoccupied at the time, it just sat on my computer until I discovered it this morning.
"Mom, why can't I go to the pool with Zack and Michael?" Joseph cries, as we sit together at the kitchen counter.
It's hot as bejeezus outside, and telling him "no" is just making me sick.
"Honey, we need to see how these new basal rates are working-- if you go swimming you'll be disconnected from your pump. And listen bud, we've got to do this now-- before you leave for camp on Sunday."
"So, great-- I get to have fun at camp next week, but this week has to be crummy."
"Joseph, that's not true. You have had fun this week, and you'll have more the rest of the week. It's just that right now we can't have you do something that'll make it hard for us to know how your insulin doses are working."
"I hate this! I hate having diabetes! I just want to be able to go do things like everyone else."
"But you can- "
"No, Mom. I can't," he says firmly. "I'm sick of not being able to just do what I want."
He looks down at the counter, and pauses before going on.
"I'm gonna be glad when I'm grown up and don't have to do this anymore."
"But honey, you might still have diabetes."
Immediately I want to take back those awful words.
"NO! Don't say that!" he shouts-- then gasping through tears, "I can't still have diabetes when I'm grown up! I can't!"
Now he's crying hard, and I'm suddenly aware of how absolutely sure this boy is that he will be cured before he's grown.
And at the same time, I see how little faith I've had recently that this will come to pass.
I reach over and pull him close. For a while, he just cries.
I cry too.
"Joseph, I was wrong to say that," the words catch. "There will be a cure-- you're not gonna have to live with diabetes the rest of your life. I just read an article in Diabetes Forecast the other day that talked about all the reasons why there'll be a cure in the next 5-10 years. And we've talked about Denise Faustman and what she's doing.
It's just that, well, I want to keep you healthy now until that time. I know we're not always gonna be perfect, you're gonna go high, low-- heck, we're gonna make mistakes -- we're human. But honey, if you think it's okay to not do things like basal testing because a cure is coming- "
"No Mom. It's not like that. I'm not gonna be careless. I'm gonna take care of myself." He says these things with so much resolve that I feel ashamed for having implied otherwise.
"I'm sorry. The next time I say anything about there not being a cure, you just slap me upside the head, okay?"
He smiles, but we're both still shaken from this conversation.
Two nights later, we're standing in the kitchen trying to figure out what Joseph should have for a dessert. He's lobbying hard for a "Gramma cookie," but we always seem to have trouble figuring out the carbs. We finally settle on a couple of Girl Scout Lemon Cremes.
"Hey Mom-- when I'm cured, ya know what I wanna to do?"
"What's that, bud?"
"Eat two big jars of glucose tabs-- will you join me?"
"You bet, and we'll wash it down with one big 'ol bottle of soda-- sugar soda," I say, as I wrap my arms around him.
"Mom," he says looking up at me with watery eyes, "I really hope I get cured before I get out of puberty-- 'cause then I'll still be a kid and I'll really want to do that-- you know? Have all those sweets with you like that."
"I hope so too, bud. I hope so too . . . "
Friday, August 25, 2006
I wrote this entry late one night during the week before Joseph went to diabetes camp.
Tuesday, August 22, 2006
Thanks, everyone-- for the support and kind thoughts.
After sharing the comments from my previous post with Joseph -- as well as a very thoughtful e-card sent by the lovely Miss Allison -- we ended up spending Saturday afternoon at a company picnic.
The theme was "Down on the Farm."
Throughout the day, Joseph and Evan rode a pony; held baby chicks, ducks, and some rather rambunctious bunnies; and fed all manner of farm animals-- goats, pigs, sheep, even llamas. Later, Ryan and Joseph dominated the bean bag toss-- while I, dear friends, took part in a pie eating contest.
No, I didn't win-- in fact, I came in dead last -- hobbled by my mother's early lessons on eating "like a lady."
And a very watery blueberry pie.
The only time the subject of Joseph's anniversary really came up was when he told Ryan's boss about it-- a man who has been type 1 for 32 years and is still on shots.
They traded stories, with Joseph showing him his pump and giving him a primer on the thing.
Now, I did want to do something special with Joseph this weekend-- just the two of us.
Sooooo... I took him to a local pub Sunday night to see the Red Sox play the Yankees on ESPN (we don't have cable).
We shot pool and watched Curt Schilling pitch a brilliant game... only to lose the thing in the 10th inning. Ah well.
And while we discovered that the bartenders at this particular pub were Red Sox fans, we didn't talk about diabetes at all.
A Post Script:
Per Jamie's request -- me, eating pie:
Just click on the photo if you'd like to see more pie-eating and some snaps of the kids on ponies.
Saturday, August 19, 2006
Two years today.
It was still dark when I climbed out of bed-- finally giving up on sleep.
I'm not sure what we'll do to mark the day.
It feels like we should do something, but I don't know.
We had a great time in Milwaukee. I kind of wish I'd mentioned the anniversary to Joseph while we were there-- that it was coming the day after our return -- but I just didn't think of it.
We went to the zoo, had some fine dinners, but mostly swam in the hotel pool.
Joseph's infusion set came out both days-- couldn't withstand all those cannonballs, I guess.
My boy was a fish in another life, I swear.
Man, two years.
How can it be only two?
Wednesday, August 16, 2006
I'm heading to Milwaukee today with the kids. Ryan is teaching a class there this week, and we're joining him for a sort of mini-vacation.
Two days of traipsing around the city.
A visit to the Milwaukee Zoo (where Evan will finally get to see one of these).
Two nights of jumping on hotel beds; swimming in a hotel pool.
But best of all, we get to be with Ryan.
In the meantime, I'll leave you with the link to a site I've just added to my blogroll-- yogabeans! -- funniest thing I've come across in a while.
I promise, you'll never look at an action figure-- or Barbie, for that matter -- the same again.
Oh, and be sure to go through the archives-- the photos alone are worth the effort.
Sunday, August 13, 2006
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.
"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."
"And we danced."
"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."
"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!"
"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.
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.
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.
"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.
Thursday, August 10, 2006
"Are you nervous, bud?"
"Nah, not really."
"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.
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.
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.
Wednesday, August 09, 2006
Joseph and I went shopping this afternoon and bought this:
The boy had broken out literally overnight.
Not terribly so, mind you-- only five or six little pink blemishes scattered about his face.
Just enough to prompt him to want to take action.
And more than enough to help explain his sudden need for a lot more insulin. I've been giving him 40-50% more basal insulin over the past two days and (thankfully) that's been keeping him in the mid to high 100s for the most part-- with a single foray into the 80s before dinner tonight.
Ten minutes ago, he was 114.
I'll try to keep ya'll posted. In the meantime -- yes, I know -- I promised I'd share the low-down on diabetes camp.
Honest, it's coming.
Monday, August 07, 2006
Ten days without a post-- Yikers!
Sorry about that.
To make matters worse, this isn't going to be much of a post.
I've been trying to write something for the past two hours, but it's been almost impossible.
- I'm exhausted;
- Ryan left this afternoon to teach a week-long class in Minnesota (I miss him already);
- Joseph has been high pretty much all day-- he was 333 an hour and a half ago (Damn!);
- and Joseph's persistent highs could be the result of a brewing illness, since Evan is sick with some kind of nutty virus in which she feels perfectly fine for several hours, then spikes a raging fever and is absolutely miserable for a number of hours, after which she's fine.
Oh yes, and twenty minutes ago -- upon hearing a frighteningly loud "thud"-- I ran upstairs, flung open Evan's bedroom door, and found my little girl lying on the floor next to her bed-- hysterical and burning up yet again. It took fifteen minutes of cuddling and cajoling to get her to take some children's ibuprofen, and to help her fall back asleep .
Another five to set up enough pillows to catch her should she fall out of bed again.
Man, it's gonna be a long week.
But hey, I do have some things I'd like to share -- and people, I may just get some windows in which to do it.
There's a good chance I'll have a couple of hours to myself this week. If at all possible, I promise to fill you in on Joseph's second experience at diabetes camp (this one might take two posts) and our week-long break from diabetes management.
And if I'm lucky, maybe I'll have time to update you all on what we've been doing with Joseph's basal rates since his last endo visit.
Right now, however, I've got to go check my boy-- fingers crossed, he's coming down.
But not too fast.