Tuesday, March 27, 2007

His Royal Highness

I don't have type 1 diabetes like many of you do. I don't know what it feels like to be up high or down low. I cannot feel the sting of insulin or the discomfort of going from 50 to 400 in a matter of minutes. But I value your vivid and heart-wrenching descriptions of "how it feels" more than you know. Charlie is only 5. He can't describe it like you do. The pain I feel is different. It hurts in different places.

Friday night was a horrible night of high blood sugars for Charlie. We couldn't bring him down all night. When you expect to see 150 or 180, numbers like 344 just reach in and twist your innards. 5 – 4 – 3 – 2 – 1 …. FUCK!

So we put our faith in the correction. We correct and pray that the pump does its thing - that everything does what it's supposed to do. We pray that in an hour, he'll start to come down. Waiting, though, is excruciating. The waiting tears apart your stomach. It makes me want to crawl inside his blood stream like an insane, militant, sweat suit wearin', vein-poppin', whistle-blowin', beer-gutted, spit-flyin' high school football coach. Or better yet, ex-Pittsburgh Steelers coach Bill Cowher.



Insulin: insulin


Insulin: insulin


Insulin: insulin


An hour later, I test him. 5 – 4 – 3 – 2 – 1 ….. FUCK!


We recently moved our bedroom to the third-floor attic due to the accumulation of all these kids. I talk to Susanne via the baby monitor. Surely she heard my "FUCK" through the monitor and knows it's not good. "He's 347," I say almost robot-like towards the white plastic receiver. "I'll test for ketones."

The big red plastic Dixie cup reminds me of warm, watery beer and drinking games; standing in a long keg line at fraternity and sorority parties so many years ago.

Now I'm pressing his itty bitty junk down like it's a faucet on full blast, using the red cup to collect a hot, rapid stream of pee from a 5 year old at 2 in the morning. My hand warms. I hold my breath as it slows to a final drip just before reaching the brim. He has slight ketones. The site looks fine and it was fine earlier in the day. Of course we consider changing the site, but Charlie's blood sugar skyrockets for hours after site changes. We don't want to compound the problem, so we give the site and his pump one last chance to redeem itself.

One hour later.

Susanne takes the next blood sugar check as I listen to the baby monitor from the attic. The creaking of Susanne's footsteps breaks the white noise hum coming from the monitor.

"Snap!" goes the pricker.


"Sigh" goes Susanne.


"Beeeeeeep" goes the ear thermometer.

No fever.

We decide it's time to inject with needle.

"No!" goes Charlie.

"Please hold still" goes Susanne.

I hear Susanne making her way back upstairs. I hear too much. Every little moan from Charlie. Thrashing around in his sheets. Discomfort.

I feel it in my heart. Like a slow nail through my heart.

Even the needle injection doesn't bring him down enough. Finally, one last correction brings him to 98 by the morning.

A new day brings an opposite battle. Low blood sugars all day and into the evening.

Oh, Diabetes. You are one sick bastard!


At 11:08 AM, Blogger Shannon said...

Ack...what a battle.

You need to get Precision Xtra (ask the endo at the next appt...docs are usually good at giving meters out for free).

It tests ketones using blood. It's basically a glucose meter with separate strips for ketone testing.

At 1:41 PM, Blogger Bernard said...

You're doing a wonderful job.

I'm sorry it's so hard on Charlie and both of you.

At 4:29 PM, Blogger LORI said...

Charlie is a lucky fella to have you looking out for him.

At 5:22 PM, Blogger Penny said...


We had a night much like that a couple of nights ago.

We have a baby monitor too and when I heard Michael's sigh, I knew it meant Riley was too high or too low. He was in the 300s.

Correction after correction and still he didn't come down.

We tested ketones too at around 3 AM, but thankfully they were negative.

I too, checked Riley's temperature during the night. Trying to find a reason for why he was so freaking high. Not accepting the fact that someitmes he's just high.

The morning brought a site change and great sugars. Riley drops low after a site change, but you said Charlie goes high. It's amazing how our bodies are the same but so different at the same time.

Sorry, I'm rambling. I could just relate to everything you wrote. I've been there too many times to count, and I don't look forward to the times I'll be there again.

At 7:34 PM, Blogger Carey said...

Thank you Shannon, Bernard, Lori and Penny for sticking with my lengthy rant.

Shannon, I will indeed check out that meter. It's the first I've heard of it. Thanks.

Penny, Let's hope we can at least keep those nights from hell to a minimum.

At 11:35 PM, Blogger Scott K. Johnson said...

It is a hard fight. As parents you two have a tough job, there's no two ways about it.

But as Bernard and the others said - you are doing a wonderful job, and all of the hard work and pain you are investing now will pay dividends to him for the rest of his life.

Stay strong and do what you gotta do.

And swear more - it really helps when you need to vent. :-)

At 8:04 AM, Blogger Scott said...

All anyone can expect is that you do the best you can for your child, and it sounds like you are already doing that.

At 12:31 PM, Blogger Chops said...

Just so sorry that you all have to go through this...

At 7:03 AM, Blogger Vivian said...

Carey, that was such a perfect post. Please always remember out here somewhere is one of us going through the same thing. You guys are not alone in that gut wrenching feeling. I am so sorry that your family has to deal with all of this and that Charlie, Brendon, Riley, Daniel and all the other little ones have to know what it feels like on their end. We just survived a week of highs for several reasons. In three days, instead of the normal 12 shots, Daniel took 22 shots. His blood sugars kept trying to hang out in the 500's.
You and your wife are doing awesome and Charlie will do great as he gets older because of it. Hang in there. Sending really big bear hugs to you all.

At 7:16 AM, Blogger Chris said...

Immediately after reading this, eyes swelling, i scroll down to look once again at the pictures of your mupppets. And i think that this is not fair it sucks and its sad. But then i see charlie. He is happy, good looking, and a kid. This is what your (our) job is at the moment is to keep him/them that way. And Carey i have said this before you and Suzanne are doing a hell of a job.
Everyday i wish i can take her diabetes away from her and take it for myself...everyday.
Your humor speaks volumes about your anger towards this. I relate.
Take care.

At 8:02 AM, Blogger Sandra Miller said...

Man, Carey-- I know.

Those nights are worst-- because you see your child suffering, and feel so damned helpless.

Please hang in there. As others have said-- Charlie is very lucky to have you and Susanne.


p.s. Like Shannon, we use the Precision meter to measure blood ketones (I got the meter for a song on ebay).

Because our insurance doesn't cover the strips (will only cover urine ketostrips), I did a lot of shopping around-- found a supplier in Canada who sells them for a bit less than those in the US.

Here's the link if you're interested.

At 1:28 PM, Blogger BetterCell said...

Your anger is understandable in
what happens to your son. I was that Son in my Parents' Heart and how difficult it was for them and me alike to have another "Element" in their Lives.

At 7:40 AM, Blogger Bernard said...


Let me look at home. I may have an old Precision Xtra at home. Then all you'd need are the strips.

Regarding the Dexcom. I see on the Yahoo group DiabetesCGMS that some youngsters are using CGM systems. It might help.

Although the receiver part must be close to Charlie, you'd probably hear it buzz (for lows or highs) over a monitor.

At 9:50 AM, Anonymous Anonymous said...


i get so frustrated when my numbers won't come down no matter what i do.

i can't imagine how hard it must be to watch your child have such evil high and not be able to make it better.

i think you parents have it so tuff.

At 10:41 PM, Blogger Chatter said...

I just googled "fucking hate diabetes" and this blog post came up. I'm a wife of a diabetic who I've been with for over years and I'm so sick of the "night" lows. Here it is 1 a.m. and after two glasses of juice I'm sitting in the living room waiting for him to get out of his low. It's horrible and I feel selfish because I can't take it anymore. I'm pregnant, tired and my knees are killing from working all day. I have no idea if you'll see this comment of care to read it but I need to get something off my chest.

I'm sorry about your son. As a parent I imagine that is even harder. Best of luck to you and your family.



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