Giving Thanks... and Fight It! Friday

As we've done in previous years, we'll be celebrating Thanksgiving with friends. Cooking, talking, eating... I just love it.

Though I'm still not sure what dish we're bringing.

I'm thinking something chocolate.

(Maybe what I made that one year)

Anyhow, I wanted to check in-- to wish you all a Happy Thanksgiving, and to let you know that a post is coming.

A much longer post.

We weathered a storm recently -- something I was hesitant to blog about. Seems that unloading the heavier stuff doesn't come as easy as it used to... guess I'm out of practice.

Anyhow, that post is almost finished.

In the meantime, I wanted to bring your attention to a post-Thanksgiving online fundraiser put together by Christopher Thomas over at Diabetic Rockstar.

The campaign is called Fight It! Friday and the goal is to raise $4,000 for individuals with diabetes (and their families) who are financially struggling/uninsured. Money raised will help cover their medical costs and supplies over the holiday season.

Chris is asking folks to give just one dollar. Please click below and make a donation. It takes just a few seconds.


I guarantee you cannot find a better way to spend a dollar (or more!) that day.

World Diabetes Day 2009

People are gathering, talking, celebrating...

Blue is everywhere.

Once again, I'd like to add my son's voice to the chorus as he shares some of his thoughts about managing Type 1 diabetes and how he educates/involves his friends.

(We had a lot of fun doing this... our own mini WDD celebration.)





*Note: The blog stays blue until the end of the month in honor of Diabetes Awareness Month, returning to the usual orange-red hue on December 1st. :-)

D-Blog Day 2009

November is Diabetes Awareness Month, and today is D-Blog Day -- conceived four years ago by Gina Capone at Diabetes Talkfest as a means of celebrating the power of this ever-growing online community to share, to educate, to support anyone willing to write their story, make a comment, or simply read a d-blog.

My son was diagnosed with type 1 diabetes just over five years ago -- and honestly, I don't know how I would have coped had I not blogged about our lives here. I needed a place to unload -- but more than that, I needed to find others who could tell me that, yes, we could do this.

That my boy would be okay.

Sometimes it was hard, reading those other stories. Hearing about the frustrations, the complications, the fears this disease can instill in those touched by it.

Nevertheless, I needed to know.

But then too, were the stories about coping -- about thriving -- despite everything this disease throws at you.

So am I now certain that my boy will be okay?

No, I'm not.

But thanks to this wonderful community, I know he has an amazing shot at being so much better.

An Update from the Infirmary

First-- Joseph is doing just fine.

But I'll backtrack a moment because when I googled "H1N1" and "child with diabetes," I got nothing -- reassuring or otherwise. So here is our experience thus far:

As I said in my last post, Joseph spiked a fever early Friday morning. Well, by early afternoon he was showing all the symptoms: cough, headache, fatigue... and his fever had climbed to 102 two hours after I'd given him a fever reducer (ibuprofen).

In the meantime, his endo's office faxed a prescription for a 5-day course of Tamiflu to our pharmacy -- Joseph received his first dose by 10am (within four hours of showing symptoms).

The worst of this thing came overnight, when both his blood sugars and body temperature skyrocketed:


Amazingly, he spilled only trace ketones.

Further, by morning Joseph's fever broke and his sugars came down.

We saw a two-hour post breakfast bg spike before he joined me and Evan on the couch early Saturday afternoon. The three of us cuddled together under a soft blanket while I read Prisoner of Azcaban aloud for the next hour and a half.

Then Joseph stood up rather suddenly and headed toward the kitchen.

"Bud, are you all right?"

"Yeah," he called back, "I just want to do a check."

"47" I heard him say.

Immediately I'm off the couch.

"Bud, did you feel like you were dropping?"

"Just a minute ago."

He took five glucose tabs without my prompting and returned to the couch.

"Keep reading," he said.

Apart from that unexpected low, he felt much better than he had the day before -- until later in the afternoon when his fever spiked yet again (this time not as high -- 101.4) and his bgs rose as well:


But overnight, he didn't feel hot . . . and his sugars drifted back down.

By Sunday morning, it seemed the worst of it had passed. Though he didn't sound good and still had a miserable cough, his fever was (and still is) completely gone.

His blood sugars on Sunday, his third day since onset, looked like this:


"Amazing, Bud... I can't believe how fast you're getting through this thing."

"Mom, my immune system is beast," he said simply.

So that's Joseph. Still coughing a whole lot-- but much, much better.

Evan, however, is another story.

She's had this thing since Friday the 11th -- and is still sick.

Her fever drops to a low-grade 99-and-change for a day, and then spikes to 101-plus the next. I'd been in contact with her doctor mid-week, and then again late Friday-- after yet another fever spike.

"Sandra, you need to bring her to urgent care and get a chest x-ray. I don't like that the fever is spiking this late and her cough is worsening."

So off we went to urgent Care, while Ryan stayed home with Joseph.

"Mama, I'm scared," she says in a muffled voice through the mask they've required her to wear.

"Honey, it's all right. You'll be fine... and this won't hurt at all -- I promise."

"But it hurt last time."

"Last time?"

"When I had an x-ray and they were bending my leg on that table."

I look at her -- blanking for a moment -- and then I'm amazed that she remembers that.

After much waiting (wherein Evan and I scan the pages of her book for Waldo, Wenda and Wizard Whitebeard) she has both an exam and x-ray.

Happily, her chest is clear and her respirations are only a little rapid.

Today, Evan still has a horrendous cough -- but after 10 days with this thing, her temp is finally normal.

I'm just hoping this holds.

Well, it's here

"Mama, why don't you write on your blog anymore?"

I stop typing the press release I'm working on and look down at my girl's pale face, her dark brown and uncharacteristically watery eyes.

"Honey, I- well I've been busy with my job and you kids... and well... I don't know. Why do you ask?"

"Because I miss it."

"You miss it," I say with a smile, "but Honey, you didn't really read it."

"I did sometimes. And I liked it."

Suddenly I can see my little girl, sitting on my lap, staring at my computer screen as I type -- asking questions or laughing about the post I'm writing as the words appear one-by-one on the screen in front of us.

"I miss it too... Honey, do you want me to read you more Potter?

"Yes!" she says, then coughs loudly for several long seconds into her arm. I lean down and kiss her forehead.

Hot again.

"Sweetie, let's check your temp again first, okay?"

She's been home all week... fever and coughing.

H1N1

Her school nurse told me she's been sending 3-6 kids home a day.

And now, Joseph has it too.

He woke up this morning with a sore throat and a 100 degree fever -- exactly the same as Evan last Friday. I've got a call in to his endo.

Has anyone out there had H1N1? Anyone's child with diabetes? Did you use Tamiflu?

A Quick One Before We Leave Town

We're in the homestretch of summer vacation and it's been crazy over here.

Late last week, my external hard drive crashed... that would be the hard drive containing backups of our documents, photos and the only copies of my edited videos (files too big to store on our laptop).

Thankfully, the Geek Squad was able to recover most of my files, however, a directory containing a large number of my edited videos was lost.

I can't even tell you how much this hurts.

So let's just move on.

In the midst of the hard drive debacle, we got a call.

"Hello-- Sandra," I heard a familiar voice say.

"Zachary?"

"Yeah, um... I'm coming out for a visit... do you think I could spend a night at your house?"

"Oh, my God-- of course you can!"


For two days and one night, it was like he'd never left.



That's why when Zach's mom said they were heading out Thursday morning with friends to a huge water park, I asked:

"How would you feel if we met you guys there?"

While I didn't want to horn in on their plans, I sure as heck knew how Joseph and Zachary would feel.

"That would be terrific," Zach's mom responded.

Soooo, despite having laundry and tons of packing to do (we leave tomorrow for a road trip to the Smoky Mountains), I drove an hour away with my kids, sat astride countless inner tubes, shot down a myriad of slides with my little girl...

While my son had yet another day with his best friend.

How did diabetes figure into all this?

Well, Joseph's blood sugar plummeted to 46 by the end of his first day with Zachary-- at dusk, the two boys working on Zach's pitching, just didn't want to come in for dinner.

Ten minutes and three glucose tabs later, Joseph was 98 and chowing down on a big plate of pasta with the rest of us.

Yesterday at the water park, Joseph was disconnected from his pump the whole time. Yes, he was high as a kite and his set came out on one of the many daredevil slides he and Zach rode down together-- but we got him back in range before bedtime.

Again, I promise I'll finish the camp story (had it half written when the dang back-up drive failed) and I really, really need to tell you at least one baseball story, but you likely won't see these until after we return late next week.

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...