Wednesday, June 08, 2005

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.

11 comments:

Martha O'Connor said...

Oh, man. I am so sorry to hear about your wretched night, Sandra. {{{hugs}}}

Getting ready to start the pump this summer. This makes me think again about the untethered regimen... where you always have background Lantus onboard.

http://www.diabetes123.com/clinic/untethered.htm

What are your thoughts on this? Ever tried it?

Tekakwitha said...

Sandra -

So sorry to hear about the bad high. We all hate this disease! It's so hard to see the high, make the correction and then it's still high later. But in the end your family all seemed to work together to bring it down! Hang in there. You have an amazing amount of patience and a pretty amazing son.

Sandra Miller said...

Martha, funny you should mention this. Two days ago I asked Joseph's endo about combining Lantus with the pump for our vacation on a mountain lake in August. I actually brought up the article you cite here. The doc thought this was a terrific idea. She actually has a 15-yr old patient who has been doing this successfully for 3 years (he's a big-time soccer player).

The only reason I'm not considering using the untethered regimen all of the time is because Joseph is still honeymooning. Sometimes the smallest basal increment (.025 units/hr) is too much for him. But once he's out of the honeymoon, I will definitely consider it.

And Tekakwitha, it's taken me several days to feel calm enough about the events of Saturday night to share them here.

Thanks for the encouraging words.

Violet said...

Sandra, hello, what a night...You did wonderfully. Good job. I like how T observes that your family came together to cope with the situation: you're a fantastic team.

Abby Taylor said...

Who needs sleep?
Well, you're never gonna get it.
Who needs sleep?
Tell me what's that for?

Remember that song?

We've had nights like this, too. They. Suck. Remarkable he didn't have ketones, so it definitely COULD have been worse.

Best,
Carol Davidson from CWD
abbytaylor2@cwdmail.com

Kerri. said...

Sandra,

Tough night with those intense high readings. I agree with Abby, though - good thing there were no ketones.

I had a similar experience when I first started on the pump, involving a kinked cannula, a pitcher of sangria, and The Olive Garden. Needless to say, I rang in at 585 and remained that way for five hours. My doctors have told me that my body is very sensitive to ... well, it seems Everything, and I honeymooned for almost eight years. Now, in my adult years, I'm a pretty brittle diabetic. Once I'm low, it's hard to bring my sugars back up. And the same concept applies to when I'm high. I use a different correction factor when trying to come down from a 300 plus mg/dl.

Those wicked highs are terrible. So are the infusion set nightmares. But you guys handled it like pros. And Joseph sounds like an exceptional kid. Chalk it up to Experience.

T-shirts reading "Goddamn Pizza Hut" would be interesting. :)

Sara said...

Everything IS going to be all right, Sandra. As you're seeing, part of diabetes is those crappy unavoidable highs, but you, your husband, and your son are doing a remarkable job controlling it. You should be proud of yourself -- you're knowledgable about the disease and treatment, and you're a strong advocate for your son.

Don't beat yourself up too much.

Jay said...

Highs are my dreaded enemy. Nothing like the 500+ ones, but the 200s. I've had several of those reading where the meter just said "HI". Usually they involved parties with drinking and or buffett style chinese food. I now have a banned list. Foods/activites that are just too complicated for me to handle at the moment. I always think of it this way, better to be at 500 then 20. Your doing great. One question though. With all those corrections, do you worry about insulin stacking and then going low several hours after you get the sugars back to normal?

AmyT said...

Sandra,
Aaargh! The pendulum never stops swinging, ay? In the beginning I had several 300+ highs, corrected, and ended up shaking violently at less than 50! I am also still honeymooning, and incredibly insulin sensitive, so the corrections are always tricky.

Rest assured that you and your family are doing awesome with this! Just keep powering through. (that's what I do)

Best,
Amy

Anonymous said...

Pizza is a trouble food for me. The fat in the pizza causes me to go high hours later (really high). Maybe try setting a dual bolus. That might help when he eats something with a lot of fat.

ME said...

Couple thoughts on the "untethered regimen". First off, it may work good if you have a fairly flat basal all day. Myself and most of my pumper friends have basal rates that can range from a high of 1.0u per hour to .2u per hour. Lantus cannot mimic that. And while it may seem good to have that background insulin on board, the first step is to check EVERYTHING (pump, tubing, cartridge, infusion set) when you are dealing with a continuous high. I have seen air bubbles in the tubing cause similar problems and if you ignore the tubing part of the set, you may be missing the cause of the problem. I've been on a pump for 5 years. I would never go back on injections. Not even with Lantus. And for me, to combine Lantus with the pump seems like it's more hassle than it's worth. What if you set a Lantus injection amount for basal and then end up doing unplanned heavy exercise? You could have problems. You can temporarily lower the basal on your pump, but you can't take the Lantus back once you've injected it. I guess if you do the same thing day in and day out, it may work. For those of us who are more spontaneous it might not be such a good idea. Just some thoughts for you to consider, however YMMV.