Thursday, July 29, 2010

Seriously, it's been mostly good

After writing my last post, I felt a whole heck of lot better. I needed to talk about what happened that day-- and wanted anyone reading to be aware of how quickly ketones can get out of control.

And to be prepared if they do.

Well, this post illustrates the flip side-- our norm this summer (vs the craziness of last Tuesday).

A summer filled with drama (the stage variety, that is), swimming, and baseball.

Oh so very much baseball.

While Evan was busy discovering her inner Sarah Bernhardt, Joseph came into his own at the plate, batting over 300 in the regular season and making the All Star team yet again.

He's come a long way... remember this little guy.

This season Joseph continued to thrive on the mound, pitching in both regular season and All Star tournments, but also playing other positions-- including catcher (despite being a lefty!).

And diabetes?

Well, it dished out plenty of highs and lows-- but mostly, it stayed out of Joseph's way.

Soooo, here now is a 3 minute taste of it all...


Monday, July 26, 2010

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.


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.


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.


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.