Ahem

Joseph has a fever of 101.3. The "evil virus" has indeed struck yet again.

Earlier tonight Joseph was fine. No signs of illness. We actually went to an open house at his school. I got to read a report he'd written about the snowy owl, see the progress he's made in math (he's a bit of a wiz, you know), and view his "timeline of life events" hanging on his classroom wall. Joseph's timeline included the day he was diagnosed with diabetes-- he illustrated this entry with a drawing of a syringe, a lancet, test strips, and a meter.

I was sad that this was the last entry. It made sense, of course. His diagnosis was probably the most recent major life event for him. But I still didn't like to see it there, like a period at the end of a sentence.

Oh well, I'm just feeling kind of moody tonight. Sort of bracing myself for the next few nights and days of more frequent sugar checks, thinking hard about insulin adjustments, and just plain worrying even more than usual.

And Evan is still sick. Her fever finally broke last night, but her nose is running thick.

Blah blah blah blah... complain complain.

Feels like I'm just sitting here in my pity pool inviting y'all to join me. I better stop now before I drown in it.

Little League

I wrote this on Saturday afternoon, and just now got around to posting it....

Last night, Ryan and Evan simultaneously came down with the same rotten virus I’d been battling for nearly 15 days--- the lingering chest cold that had stolen my voice for four days, laid me out for three more, triggered a bout with bronchitis, and just wouldn’t let go until a lymph gland in my neck joined the fight by swelling out to goiter-like proportions (sorry for the yucky image, but it scared me too, so I had to share). This miserable cold virus had now invaded the bodies of my husband and youngest child.

Thank god it hasn’t touched Joseph. Yet.

Isn’t that just nuts? I hate to see Ryan sick. And my little girl. Tossing and turning last night with a fever. Both of them coughing. And the only silver lining in all of this is that Joseph doesn’t have it. Because for him, it would be so much worse. His sugars would go through the roof.

But Joseph is fine. And because he’s okay, his little league game was a go this morning.

At 8:45 AM.

Now why, if I might be so bold to ask, do they schedule these things so very early on a Saturday morning? Are they hoping to give families the rest of their Saturday to themselves?

Sounds reasonable.

Except that I don't want the REST of my Saturday. I want my early morning.

You see, because Evan was sick last night, she was up virtually all night. This means that I was up with her. And, of course there were the overnight checks of Joseph’s blood sugar, which remarkably, Ryan handled, but I can never quite sleep through. Also, we have our family movie night on Friday, so we always stay up a bit later than usual watching it with the kids.

(BTW, it was my pick— Finding Neverland, which I highly recommend. We all loved it. I was weeping by the end.)

Anyhow, if I could return a moment to my whine. This morning– no sleep. At 7am, I got up, made coffee, then realized we were almost all out of half & half (Damn! Should I take the rest or leave some for Ryan? Hmmmm. Aw hell, I love the guy. And we both love the half & half in the coffee, so I mix a little with milk, and have one lonely, less-than-creamy cup.) Joseph is up with me now. We measure out his Cocoa Krispies and milk, then bolus. His blood sugar, by the way, is 105. Very nice.

Soon he is in his uniform, and we’re out the door. Oh, speaking of his uniform, his team name -- Virchow Krause -- is plastered across the back of it. Now what’s the deal with that? I mean, I realize these little league teams need the sponsorship of local businesses to survive, but why can't they be the Virchow Krause Tigers or, better yet, Red Sox? Instead, they are named for a large local accounting firm that has a reputation for being a sweatshop. Doesn't exactly give you that "baseball-apple pie" kind of feeling, now does it? Last week Joseph and his team faced the fearsome Pertzborn Plumbing. (Ryan and I called them the “Plumbers” – we thought that sounded cooler) And soon, Joseph will be playing First Choice Dental. Then it's on to Keleny Top Soil.

Poor kids.

Ah well, it really was nice to be out at a baseball game on a sunny, crisp morning. Once that first hit of caffeine took hold, that is. Sitting in the bleachers, holding tight to a thermos of hot (albeit half & half-less) coffee, watching my boy warm up. Cheering him on as he made a beautiful play from left field. I could almost forget he had diabetes. And since he disconnects from the pump when he plays, I’m sure he can too. When Joseph comes up to bat, his teammates chant his name. He’s never had that before. The camaraderie that comes with being on a real team.

When I come to the dugout to check his sugar halfway through the game, Joseph resists.

"Can we do this later?" he asks.

I tell him "No. It's important. We haven't checked since before breakfast, and you've been disconnected for an hour and a half. "

I can tell he's running high when he grabs the lancet out of my hands, looking around to see if any of his teammates are watching. They aren't. It's a close game, and his team is at bat.

Joseph's sugar is 217. I opt not to correct. He's going to be very active. And a spike two hours after breakfast isn't unusual. And besides, he is still a bit shy about his diabetes around his teammates. None of these kids go to his school. So whenever he checks his sugar or does anything with his pump, if anyone notices, they stare. I try to encourage Joseph to explain what he's doing, but I think he'd like to view the baseball field as a diabetes-free zone. A place where he really can forget that he has this disease. I'm not sure how safe that is. What if something were to happen on the field? What if he had a severe low? But I will always be there. Or Ryan. Or both of us.

Joseph returns to the dugout. While waiting for their at-bat, he and his buddies blow bubblegum bubbles, obviously trying to see who can blow the biggest one. Joseph's is just as big. Just as impressive as the rest. And, it really doesn't matter that his is sugar-free.

Pump Failure

Okay, so last night I’m getting Joseph ready for bed– checking his blood sugar, and then checking his basal setting on his pump. It’s 10 o’clock. I know, I know, kind of late for a kid who has to go to school in the morning, but he just HAD to see the finale of The Amazing Race. (As did I).

Anyhow, I hit the backlight button on Joseph’s pump to “wake it up,” and the screen lights up. But no display. Nothing. No words. No numbers.
A complete and utter blank.

Now THIS is a problem.

For you see, without a display I have no idea what the pump is doing– I cannot adjust his basal, I cannot give him a bolus.

Initially I thought if I just push the backlight button a few times, the damn thing would wake up. And it worked – sort of. The pump alarm went off, then it began to vibrate so vigorously I thought it was going to jump right out of my hands. This was not good. I stayed calm– primarily because Joseph looked as if he was going to lose it any second. “Mom, what can we do? Why isn’t it working?” he asked while choking back tears. I could understand why. After all, in the less than four months he’d been wearing his pump it had truly become a part of him. A part he could trust– unlike his pancreas.
At that moment I wanted to strike the person who made this pump.

So I said we’ll call Animas – that’s the pump company – and find out what to do next. I put in the call, and received a call back about three minutes later. I was told that Joseph would be sent a replacement pump, however, because it was so late in the evening, we wouldn’t receive the new pump until Thursday morning. Dang! In those few minutes it took for Animas to call back, I’d had the irrational fantasy that they’d put a pump on a truck that evening, and we’d wake up to find it on our doorstep in the morning....

Next call– “pediatric diabetes physician on call.” Again, the call back was quick. We were to put Joseph back on shots (obviously) until the new pump arrived. Happily we had a nice stash of Lantus in the fridge for just such an occasion. I’d always hoped it would just sit there, gathering dust, like an insurance policy untainted by a claim. Oh well.

Joseph was NOT pleased with the whole shot thing. Neither was I. But pulling out a vial, pushing in air, then drawing insulin into a syringe. Trying to find a fleshy part on the back of his arm, then pinching up the skin. Holding the syringe like a dart and poking it in quickly, pushing the back of it – in and out, just like that.
Like riding a bike. You never do forget.

Though we all look forward to the arrival of his new pump, I must say this incident has me more than a little shaken. We are so dependent on this device. Losing the display was bad-- very bad. But what if the malfunction had caused something more than a terrible inconvenience? What if insulin delivery had been affected? You can go crazy thinking about these kinds of scenarios. About our child’s vulnerability while wearing this device.

But we have no choice really. A pump will give him the best glucose control. And, if we want to give him the best odds for a complication-free future, then we must trust ourselves and the technology we’ve chosen to help ensure he has that future.

A Little More History

Yesterday Violet, from Pumplandia, wondered "if some kids have greater resilience than some adults in their ability to adjust to a life-changing illness." saying that she imagines "this depends very much on the individual." She got me thinking back to the hours and days after that awful diagnosis moment. And in thinking back, I believe there is a great deal of truth to Violet's statement.

Immediately after discovering that he had diabetes, Joseph was devastated.

But obviously that's not where he is now. Nor, incredibly, was it the place he occupied later that very same day.

We were told, in those first minutes, that Joseph needed to be admitted to the hospital that afternoon. A bed would have to be found. And because three other children in the area were diagnosed with type 1 that day (that's right-- three other children), there would be a wait to find out where we would land. During this time I had called Ryan to tell him what was going on, and to have him come with Evan to the pediatric office. When he arrived, we just looked at each other, and communicated volumes in the exchange. Then Ryan grabbed hold of Joseph, and held on so tight I thought he might break him. Later Ryan would tell me that after he'd gotten my call he had briefly looked online, wanting to know what we were dealing with. He'd read some of the worst case scenarios for the disease. It was the first time he'd really cried in years.

After nearly two hours of waiting in a tiny exam room, we were informed that Joseph was in. We were to drive to the hospital-- 5 minutes from the doctor's office-- and plan on being there until Sunday night. This was Thursday afternoon.

Yes, when Joseph discovered he had diabetes he was scared-- for about half an hour. After we reassured him that everything would be all right -- that we would learn how to deal with this, and he would be fine-- he calmed down. And then it dawned on him that there was now an explanation for his bedwetting, and that we could DO something about it. His spirits began to lift. And when he found out that in the hospital he'd have cable TV, Playstation and diet soda -- all things he did not have access to at home -- he was positively psyched.

At the hospital, Joseph was a model patient. More like a guest really. No IV. No real signs that he was sick. Ordering in room service, a little extra for any friends who happened by. And with me and Evan sleeping in a cot next to his fabulous adjustable bed, it felt like a slumber party.

On Friday, Joseph listened patiently to the Dietician as she explained to him the basics of nutrition. And after she gave him the definition of a carbohydrate, Joseph said in a calm, and not the least condescending, voice, "I think you must be used to talking with kindergarteners. I already know this. I learned about nutrition in first grade."

When he met our Diabetes Educator on Saturday, Joseph listened carefully to everything she said -- knowing that when our session was done he could go back to playing a video game. Checking his blood sugar was a snap. Joseph has never been one to shy away from needles. It's always been the emotional stuff that's gotten to him. He immediately began, not only doing his own finger sticks, but giving himself shots in the top of his leg. Amazing.

And when I expressed my concern about how he would feel dealing with all of this at a new school, with new classmates, Joseph took my hands and said "Mom, you're the one who's worried about that. Not me." And I thought "Who is this child? This boy who can take in all of what is happening and handle it so calmly, and with such grace."

By Sunday, they told us we were ready to go home. "Huh?" I thought. How can we be ready for this? It was so big. There was still so much to learn.

But Joseph was ready. He couldn't wait to show his friends his meter.

Diagnosis Stories

A lot of these stories are showing up lately. I was reading Violet's wonderful blog this morning, Pumplandia, and was very touched by her diagnosis story . She is right when she comments that there is a great deal of diversity in everyone's stories. But I think the common denominator here is not simply the end result, but also the process of betrayal by one's own body. The feeling that you just can't trust it anymore. And in the time leading up to diagnosis, you have no idea why. Joseph felt this as he realized he couldn't go to bed at night without knowing if his pajamas and sheets would be soaked in the morning. He couldn't go for a walk or drive without fearing he might need to pee or, just as desperately, a drink of water. And, in reading Kerri's story as well -- though she wasn't sick in the time before diagnosis-- wetting the bed, and subsequently, having to wear “The Alarm” must have prompted a tremendous loss of faith in her own body. I don't know what that must have felt like as the child experiencing this, but as a mom who woke every morning holding her breath, hoping her child had a dry night, and inevitably feeling the pain as her son struggled to tell her about his accident, I have an inkling.

Like birth stories, these tales of transition share common markers – and these are important. They are an integral part of a journey that leads all those who embark on it to the same place– a new and very different life. Sharing the diagnosis moment and its precursors lets diabetics know that they were not alone in that early betrayal– the time when your body rebelled and you had no idea why.

And, going forward, in this new life of blood sugar checks and boluses, highs and lows, these stories reaffirm that you are not alone.

Change is Good

What do you think? Is red my color? I wanted something a little brighter, a little warmer...

So last night we continued our middle-of-the-night testing of Joseph’s “new and improved” basal rates. And guess what? For the first time since he started the pump, no corrections were necessary. No highs. No lows. He coasted through the night between 115 and 135.

If this is what life is like post-honeymoon, then I say “bring it on!”

Now, I can’t get too excited about this because I’ve been told that while he may be moving out of the honeymoon, it might still be a while before he's completely out of it.

In other words, don’t count out the power of the pancreas just yet.

Okay, but for right now, making those first frighteningly big changes in his basal rates has made us all very happy. In fact, Joseph is so pleased with how he's been feeling in the last couple of days that he actually wants the honeymoon to be over. As I said in my previous post, I do have mixed feelings about parting with his remaining beta cells. Feelings that got pretty intense the other day. Of course, lack of sleep, a horrendous cold, AND an ill-timed hormonal surge didn’t help.

But today, with new basals in place, my son’s blood sugars are looking great, and more importantly, he’s feeling great.

Change is good indeed.

Is the Honeymoon Over?

I don’t know. Joseph’s been running high for several days now– night and day. Mostly low to mid 200s. Corrections, set changes. Basal rate and bolus adjustments. Nothing seems to help. It’s possible he’s getting my chest cold (which really sucks– I’ve got an awful hacking cough, and depending on the listener’s age, my voice sounds like Lauren Bacall’s/ Brenda Vaccaro’s/Demi Moore’s).

Cold viruses have shot him up before.

So right now I'm waiting to do another blood sugar check. Joseph’s upstairs playing in his “world” which is comprised of many exciting imaginary figures who battle all manner of monsters. Lately, he’s been interested in learning how to play Dungeons and Dragons – reading the core rulebook, and acting out the part of the character he hopes to create: a half elf who possesses magical powers, and the ability to defeat any foe.

He was 497 when he called this morning from the nurse's office at school.

497.

He hasn’t been that high since diagnosis. God, maybe he really is coming out of the honeymoon. Why the hell does that bother me so much? It’ll probably make controlling his blood sugars so much easier. After all, there won’t be that “mystery dose” of insulin coming from his pancreas – the dose we can’t possibly factor into our calculations.

But just typing this right now has me crying. Why am I so attached to those stragglers? Those stubborn beta cells that didn’t die with the rest of them. I’ve told myself that it’s because a cure might be found that would require these cells. It’s possible. Taking in less insulin is better. And it is.

But truthfully, I don’t think I can give up on these cells because they are all that’s left of my pre-diabetic son. When they're gone, he'll have nothing in his body making insulin. Nothing at all.

I know. Joseph is the same amazing kid he was before all of this happened. He hasn’t become someone else. But the child who could eat what he wanted, when he wanted, without having to THINK about it, is gone. The child who didn’t have to have a cannula inserted into his belly or hip every 3 days. Who didn't have to carry emergency supplies wherever he went. Who didn't have to know when his blood sugar was dropping. And be afraid when it did. Who didn’t have to worry about being different in a way that few of his peers understand. The child who didn’t have to grow up so goddamn fast.
He’s gone.