When you think it can't happen to him

I need to remember to put the phone by Joseph so I can wake him up to do a check after I'm gone.

(That's my first thought on waking at 6:15 am last Tuesday morning.)

This will be Day Two of a conference I'm attending for my job. The event pulls together folks from citizen advocacy groups across the Midwest. And since most of the work I've done this summer has been from home, this opportunity to learn, share ideas and meet other advocates is welcome indeed. In fact, I rearranged our summer vacation plans so that I could be in town for this thing -- and I'm really glad I did.

I have to be downtown at 8am, the same time Ryan has to be at work -- and Joseph is going to watch Evan for us.

Before heading downstairs to shower, I snatch Joseph's meter and logbook up off my dresser, and step quietly into his room. My boy is stretched out on his futon, face buried in his pillow, when I take hold of his right hand and prick a finger.

368

Wait-- that can't be right.

Whipping open his logbook, I see that he was high all night -- and that he and Ryan did a set change at 2am when he was 398.

Ryan noted that he'd had a bent cannula.

Despite the fact that Joseph has been in the 300s before -- that there have been times when he's experienced a night of high blood sugars, and he's been okay -- I get a sick feeling.

Deep down in the pit of my stomach.

It takes all of 10 seconds for me to run downstairs, grab the blood ketone meter from the black bag, tear open and load a strip, and prick yet another of Joseph's calloused finger tips.

2.1

Oh no.

In almost six years with diabetes, Joseph has never had a blood ketone reading higher than .5 -- a urine ketone strip darker than pink.

Not even at diagnosis.

"Joseph... Joseph... Bud, you need to get up," I say, shaking him gently while trying to stay calm. "You're really high and you've got ketones. A lot of ketones."

Joseph is suddenly bolt upright and heading into the bathroom. Seconds later, he walks back into his room, wide eyed -- holding out a urine ketostick with a dark maroon tip.

"Okay, Bud-- let's get you some water. We need to flush out those ketones."

"What's going on?" Ryan asks, joining us in the hallway.

I fill him in as the three of us move quickly downstairs. Even though Joseph has a new 4-hour old set, and a correction on board, I draw up a shot, inject, then have him sit on the couch and drink a glass of water.

"This is really bad," I tell Ryan quietly in the kitchen-- and as if to illustrate this point, Joseph calls out from the couch:

"Mom, my stomach doesn't feel good- "

He hardly gets the words out of his mouth before he's back up and running to the bathroom. I'm right behind him. He barely makes it to the toilet before he's retching violently. I crouch down by his side and rub his back. When he's done, Joseph sits back, leaning against the tub.

"I feel a lot better, Mom," he tells me in a shaky voice, "I think I just needed to throw up."

And for half an hour, he really does seem better.

But then when I check him again at 7am, his blood sugar is 323; ketones are now 2.4.

Worse -- after more water, he's vomiting again.

We can't do this ourselves.

I grab the phone and punch in the number of the diabetes physician on call at our clinic -- then pace all over the house until finally, 15 minutes later, he calls back.

I give the doc everything -- Joseph's numbers from the previous night (he was 120 before dinner, before climbing into the 300s overnight), ketone levels, the vomiting...

"All right," he says, "it sounds like you're doing all the right things. You need to give him insulin by syringe every two hours, using a sliding scale -- let's not rely on the pump. Also, you need to give him calorie-containing fluids -- watered down orange juice, flat soda... -- and then insulin for them. Remember, the idea is to bring down the ketone levels, not necessarily the blood sugar.... "

"Should we just bring him in?" I ask, trying to keep the panic out of my voice.

"No, I think you may be able to turn this around at home -- but if you don't see improvement in the next 4 hours, then you'll have to bring him to the emergency room."

"Okay," is all I can say. Anything else is caught in my throat. Through tears, I write down the sliding scale for Joseph's injections.

Then I take a deep breath and return to the kitchen.

"Ryan, we need calorie-containing fluids -- the doc suggested watered-down orange juice, but I think the acid is going to be too hard on his stomach. Ginger ale and Gatorade or G2 might be better."

So Ryan heads out to a store five minutes from our house.

And I'm pacing again.

It ends up taking him nearly 20 minutes.

At 7:50am we do another check-- Joseph's blood sugar has dropped to 268, ketones to 1.9.

Thank. God.

I have him drink a small glass of G2, and within minutes he's vomiting again. Bending over him, I press gently on the back of his his neck with a cool, moist cloth. "You're gonna be all right," I say to him, over and over.

A little over an hour later -- at 9am -- his blood sugar is 245 and ketones have dropped to 1.5.

"I think he's turned a corner," I tell Ryan.

"Maybe you can go to your conference," Ryan says, "I can stay home the rest of the day... "

"Maybe... but not until I know he's really okay and- "

"I'm hungry," interrupts a small voice coming from the stairs. Evan is awake and ready for breakfast. Ryan gets her a bowl of cereal. After eating she joins her brother in the living room, settling in on a chair next to the couch.

At 9:45, I leave a message for my boss bringing him up to date on what's happening, telling him that Joseph is feeling better and that I might be able to make it to the 11:15 session -- unless something changes between now and then.

And it does.

15 minutes later, when I check Joseph again, his blood sugar is 287 -- ketones are back up to 2.2.

The whole time, even though we've been injecting him, Joseph has been connected to his insulin pump. I'd hoped the basal insulin he was getting from it might help...

"Bud, can you pull out your set?"

He reaches down to his left hip, takes hold of the set and pulls.

Then we both just stare at the cannula: a tiny teflon tube, bent so flat it's flush with the surrounding adhesive tape.

Two. Two bent cannulas.

"I should have had you do that earlier. I just assumed... a new set... "

When I leave the room to get a new infusion set, I stand alone in the kitchen. Frozen. Thinking about this stupid mistake and what might happen because of it.

Then I grab a set.

After insertion, I give him yet another injection.

An hour later, at 11am, Joseph's blood sugar is down to 264.

But ketones are 2.5 and he's throwing up again.

"Bud, how do you feel?" I ask him, when he resettles on the couch.

"Better," he says, "actually... I feel hungry."

We both laugh. But still, I'm frightened-- and feeling more helpless than I have in a very long time.

Noon is the cut off, I tell myself.

Regardless of blood sugar, if ketones aren't improving or he throws up again, we're going to the ER.

At 11:55, I take hold of his hand.

"I'm sorry I have to keep doing this, Bud."

"It's okay, Mom." Then he gives me a long look. "Thanks for staying with me."

I look down at his hand in mine, unable to say anything. Then, praying silently, I prick the tip of his finger, touch it to the loaded strip and stare at the meter's display.

.9

And it's like a mass has suddenly been lifted from my chest.

"Yesss!" we both say, high fiving and fist bumping.

Blood sugar is still high at 244, but thankfully, it too is coming down.

"Mom, if my ketones keep going down, can we get Subway for lunch?"

"Whatever you want, Bud... whatever the heck you want."

Then I sit with him on the couch, his head in my lap, and watch reruns of the Cosby show, during which his ketone levels fall from .9 to .7 to .4 -- and finally, to zero.

(Though it takes until eight o'clock that night to bring his blood sugar down to 115 -- and far longer for me to feel in any way relaxed.)

Oh, and yes-- we did indeed get Subway for lunch.

"Don't Be Afraid"

She's smiling.

Which seems a little surprising-- given the number handwritten in black ink on that sheet of paper sitting on her desk.

"Joseph, you've gotten so big!" she says enthusiastically, "I wonder if you can you see over my head now?"

Immediately, my son leaps out of his chair.

Standing directly in front of her, it's clear that Joseph is now several inches taller than his endocrinologist.

"Oh my!" she says, red-faced and laughing. "I think we can safely say you've begun the adolescent growth spurt."

With these words, Joseph throws his arms around his endo -- giving her a huge bear hug -- then, grinning, returns to the seat next to mine.

He's growing. That's the most important thing.

I tell myself this over and over while smiling at the two of them.

But then my eyes wander back to that sheet of paper.

To that number.

"Yes," she says with a nod, "we did see an increase in the A1c."

Joseph's head snaps up.

"From 8 to 8.5."

And now the only one smiling is Joseph's doctor.

"I'm not worried about this," she says, noting our somber expressions.

"A number of things are going on here. First, it's obvious that Joseph saw periods of rapid growth since his last appointment. This is probably the most significant factor."

She pauses a moment, thumbs through Joseph logbook, and then continues.

"Now, according to the log, you had a problem several weeks ago with a leaking cartridge..."

"That's right," I say, remembering that awful night.

Blood sugars in the 400s, followed by corrections that had no effect-- injections, a site change...

And finally, the anger and shock at finding his meal and corrective insulin clinging to the sides of a soaking wet, almost empty pump cartridge.

Our son hit a diabetes milestone that night-- moderate ketones.

"Keep in mind," the doctor continues, "blood glucose over the last month will have a greater impact on the A1c-- so this 8.5 is partly due to that incident."

Joseph says nothing, but listens intently.

"So what can we do?" I ask.

"You increased Joseph's basal rates three weeks ago-- and those new rates worked well for a while, but the highs are returning. So I've raised them again-- overnight and early in the morning. That should help."

She hands me the sheet of paper with Joseph's new rates-- and his A1c.

"Understand," the endo goes on, "you're probably going to need to increase his basals every two weeks."

And now my head snaps up.

"Don't be afraid. You need to do this, Sandra."

"But every two weeks- "

"He's going to need a lot more insulin now that it's clear he's entered puberty in earnest. And the amount he'll need is going to keep changing as he grows."

I know she's right.

The ridiculously frequent, insulin-resistant highs we've seen over the last three months made that perfectly clear.

Walking out of the clinic an hour later, carrying his new basal rates -- and the weight of that number -- I can still hear her voice.

"Don't be afraid."

But, I am afraid.

Not of making changes, nor of working harder.

No.

I'm afraid of that damn number.

I'm afraid of what it means might be happening inside my son's body.

I'm afraid that -- no matter how hard we try -- it won't be enough.

Smoky Mountain Highs

It was a long drive-- three days to get there, two for the return trip. Through the endless flats of Indiana (that included a reverent nod to French Lick, just fifty miles west); to a lush and very wet Kentucky; and finally on into the mountains of Tennessee and Western North Carolina...


Oh yes, we were up there.

Unfortunately, so were Joseph's blood sugars-- proving an almost mirror image of those mountain peaks.


Corrections, temp basals, larger meal boluses... it didn't matter. Once again, we found that just sitting in the car for many hours makes our son almost impervious to the effects of insulin.

He will go high.

Thankfully, however, blood sugars improved as we settled in for a fabulous visit with Ryan's brother and his wife that included: traipsing around downtown Chapel Hill;


hiking through woods and discovering both an astounding number of polywogs and a skirmish between an owl and two blue jays; ah yes-- the eating of grits, among other fine foods; spending a lovely afternoon by a lake that involved much talking, fishing, and throwing of a baseball; and really just enjoying being with family.

Oh yeah, the kids also loved the almost unlimited access to cable TV.

And hey, the boy caught a turtle.

Change Is Coming

Reading Violet's post this morning, I found myself nodding with the realization that what she describes there is exactly what we've been experiencing here over the last couple of months.

The highs. The ever-present, ever-creeping highs.

At first I thought it was the colder temperatures-- the decrease in physical activity. Possibly the flu shot a few weeks ago. A growth spurt? Perhaps.

Maybe all of these things.

Then again, maybe none of them.

Like Violet, Joseph has been gradually needing more insulin. His two hour post-breakfast sugars have been spiking into the two and three hundreds. Not terribly unusual. Except that he's not coming down to normal range by lunchtime. We're still working on this one.

His overnight numbers have been creeping up as well -- to the point that, when once he took as little as .025, he now takes as high as .325.

Yeah, we've seen this kind of thing before-- more than once. But each time, he seemed to go through some sort of acute stage-- when he needed a lot of insulin (during a growth spurt), only to slide back to needing just a bit more insulin than he had before the episode began.

Not this time.

I've been told that control will be a lot easier when Joseph leaves the honeymoon. That because he'll no longer receive that "mystery dose" from his pancreas, his blood sugars will become more predictable.

But I've also read that control will be more difficult because there will no longer be the safety net of that back-up dose. That whatever my son receives will come from the outside.

We'll be on our own.

Lately, I haven't let myself seriously consider this possibility-- rarely attributing what has been going on to the honeymoon's end. Sure, I've mentioned to Ryan that "this might be 'it.'" But I've thought that before, and been wrong. Now, this morning, the possibility of this being 'it' seems to make all the sense in the world.

And yet, just as before, I still have a hard time with this one. For, despite Joseph having had this disease for over a year now, I still take comfort in the thought that he has some beta cell function.

Well, now it may be time to move on. To fully accept the fact of this disease in all it's full-blown glory.

Yeah, we've got a lot of work to do-- he's really gonna hate the basal rate testing that I think is inevitable if we're ever going to get back some semblance of control. His next endo visit is in just a few weeks. The way things have been going over the past couple of months, I fully expect a rise in the A1c.

Ah well.

Man, all of a sudden I just feel sad.

To be expected, I suppose.

Up Again

It's 3:05 a.m. and I can't sleep. Joseph was high about two hours ago (247), and Ryan gave him a correction. I just checked him again, and he's 198.

Is this the way it's always gonna be? Night after night.

How is he going to deal with this on his own? It just paralyzes me sometimes. This fear of the future. The unending checks. I can do this. Ryan and I both can. But eventually, this will be his responsibility. To keep checking, correcting, checking, correcting...

I don't know. I'm just tired. And feeling kind of burned out.

This whole thing is just nuts. Why did this have to happen? Why him?

Joseph starts school again on Thursday. Already I'm worrying about his ride on the bus-- worrying that he might go low, and no one will notice. How will his new classmates react when they learn he has diabetes?

I'm just sick of it. Sick of this whole damnable disease.

It seems every day there is some horrible bit of news about a diabetes-related complication. Last night, Joseph was reading Diabetes & You, a magazine we picked up this week at a JDRF meeting. On the cover was a photo of a group of kids and the title, "Kids Speak Out." Sounded pretty good. But inside - among other horrors - Joseph found an advertisement for foot gel that pictured an insignificant looking foot wound-- a small cut, really. The ad's copy read "If you have diabetes, even a foot wound this small should be cause for alarm." And in bold blue letters, "If not properly treated, a diabetic foot wound can lead to amputation." Christ.

I don't want him thinking about ANY of that. He's just a kid. He doesn't need to go to bed in fear of losing one of his feet. It's wrong. This is so wrong.

Joseph is smart. He's a kind, sweet, funny, sometimes temperamental kid. Oh, and he's got the tenacity of a pit bull.

He doesn't deserve this.

No one does.

High High High

Just when you start to believe that everything is gonna be all right, it all goes to hell.

Saturday night. Joseph's sugar spiked to 580. Only after two set changes, two shots, two tests for ketones, and much handwringing-- did his blood sugar come down within the normal range. What caused this nightmare of an all nighter?

You know, there's a saying that it's never really just one thing.

Joseph had a buddy sleep over, so he was extremely amped up before bedtime. He'd eaten 120 grams of pizza for dinner (more than twice the usual amount), and it was takeout from Pizza Hut (which we never get). I thought "that must be why he's so high." His before-bed sugar at 10pm was 463. Good Lord! We corrected, then put him and his friend to bed. I decided to check him again at 11.

That's when he was 580.

Immediately I got him up and had him pee in a cup. No ketones. Bolused another correction, (thinking "goddamn Pizza Hut!") then back to bed. Poor kid was exhausted.

Ryan and I stayed up, waiting an hour to check him again. At midnight he was 575.

All right. There's something terribly wrong here.

The set had to come out. And he needed a shot. Joseph was surprisingly alert when I woke him up and told him that he was still in the 500s and needed a set change. He simply got out of bed and said "I'll pee first and drink a glass of water. That should help me come down."

During this set change we discovered blood in his cannula. "Oh, that explains everything."

We gave him a shot, then continued to check and correct every hour. After three hours, his bg went down to the high 300s. But an hour after that, he was back up into the high 400s. What the hell? No monkeying around. Let's get the damn set out and give him another shot. Before we pulled the set, we had Joseph disconnect. That's when we noticed that the metal part of the connector at the end of his tubing was bent. Jesus Christ.

So we replaced the tubing, checked yet again for ketones (miraculously, none), and continued to check every hour while he slept. He didn't get down below 200 until 8:10 am. Ten hours after we discovered that first ungodly high. Ten. Freaking. Hours. That can't be good.

I really really really hate this disease.

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.

High Again

After almost two weeks of fairly steady blood sugars, the party's over. Joseph just called from school to give me his before-snack sugar. It was 346. Dang! I told him to correct. With the pump this means entering in your blood sugar and then bolusing the suggested amount of insulin. I also asked him to drink a large glass of water. God I hope this works. He said that his site still looked good... this is where the tubing connected to the pump enters his body. No signs of air bubbles in the tubing. Aw hell. I'm already getting tired of troubleshooting this pump and it's only been two months! Maybe it's because I've insisted we be completely anal about testing-- we test 10-13 times every 24-hours. This includes checks at midnight, 2 or 3 am, and 5 or 6 am. Have I mentioned the lack of sleep here? Thank god Joseph sleeps through the overnight checks, but his fingers are looking rough.

Anyhow, we'll see how well his correction worked in another hour and a half. In the meantime, it's a beautiful sunny day, and it would be nice to take Evan out for a bike ride. But I'm so dog tired. And Joseph's sugar might not have come down....

Update: Joseph's correction worked! Yay! He was 142 before lunch. And with that, I've gotten a second wind. I even managed to take Evan on a bike ride after all. And it was glorious!