Tuesday, November 14, 2006

Pump: Should it Stay or Should it Go Now?

If it stays, there will be trouble. And if it goes there will be double.

That's how we're feeling about the pump these days. We're at a crossroads. I know it's only been two months with the pump, but we're losing our patience. We're just not seeing the progress we had hoped to see. The wife is so fed up, she's even set a 6-week deadline. If it doesn't clean up its act, it's outta here.

We're still waiting to see the pump in action. Waiting to really see it do its thing. In the past two months, we've tinkered with our settings ad nauseam. It's just so damn frustrating that we still can't get it right. Sure, Charlie has decent blood sugars occassionally, but rarely for a full day from beginning to end. Very often there's at least one part of the day when he's too high or too low.

We want to see the pump keep his blood sugar level overnight, when food is not a factor. But we almost always find ourselves running in circles. "OK, tonight's the night," well say confidently, doing our best to stay positive. But it never fails. We almost always have to intervene in some way. The result often makes him too high or too low.

"Wake up, Charlie, you need some juice."

Or we just flatout lie, taking advantage of the foggy, dreamy state he's in.

"Charlie. Charlie! Here's the juice you asked for. C'mon Charlie, open your eyes."

We're not waking him up because he's low per se. But he's about 110 with still some active insulin working. So we feed our little lab rat just 2 ounces of apple juice because we don't want him too high, don't want him too low. Want him JUST right. Charlie falls back heavy on his pillow and is out.

Half an hour later he's 88. Fuck! More juice.

"Charlie! Charlie, wake up. Here's that juice you wanted."

He sits up, his eyes still closed. He moves his lips and reaches blindly like he's playing an imaginary saxophone until we manage to navigate the juicebox straw into his mouth.

My wife will get up again and test him at 1 am and again at 3 am. Somewhere in between that or after that (it's all a haze), we'll get up again to change his clothes because he's soaking wet with pee because of all the juice we force-fed him.

7 am comes and my wife looks like a beaten up heroin addict. I do the honors.

"What is he?" she asks weakly.

"Not bad. 119," I say proudly.

"Huh," Susanne says. "Was a pretty good night."

11 Comments:

At 6:25 PM, Anonymous Anonymous said...

This sounds like our house. Please keep us up to date on the pump decision, Daniel is still not sure he wants to try one. Thanks.
Vivian

 
At 8:35 PM, Anonymous Anonymous said...

This is a tough one, Carey.

I read your post earlier today, and am still not sure I have the right words to respond to it.

You see, we're experiencing much of what you describe here-- the uneven blood sugars, overnight checks, and those damn lows.

Sure, sometimes we'll have a run of good numbers, but then we always seem to return to some degree of volatility (though, I believe this is more a function of the disease than from problems with the pump).

I remember what is was like when Joseph first started pumping-- the learning curve was steep. It took us a number of months to get to the point where we saw many more days with decent blood sugars than he'd had on shots.

Also, bear in mind that Charlie is growing, and whenever kids go through growth spurts, their blood sugars go haywire-- this could be contributing to at least some of the volatility you're seeing (along with a host of other factors-- i.e., increased activity, eating foods that digest more quickly or slowly... ).

You all may want to check out (if you haven't already): Pumping Insulin by John Walsh and Think Like a Pancreas by Gary Scheiner. Both are wonderful resources for maximizing the insulin pump's potential.

Carey, if you or Susanne ever have any questions about the pump (or just want to commiserate about yet another long night), please feel free to email me directly.

(((Hugs)))

Sandra

 
At 5:45 AM, Blogger Carey said...

Vivian,

I'll let you know how it goes. I do think it's probably our best option right now. We just have to get it through our heads that it won't be perfect.

Sandra,

Thanks very much. May take you up on that (emailing you pump questions). Hopefully in a few months, we'll all have a different attitude about the pump. This shooting at a moving target all the time wears on us as I'm sure it does for you.

There's room for improvement with Charlie on the pump. We know that. We just have to come a little closer to figuring that out.

Thanks for the book suggestions. We don't have any pump books yet. It's time we did.

Carey

 
At 6:54 AM, Anonymous Anonymous said...

Carey-

Yes, you are so right about that moving target, and how it can wear you down. I still have days when I want to just sit with my head in my hands and cry.

And sometimes (though not nearly as often as early on), I do.

Please go easy on yourselves. Though I keep striving for it, I truly believe that perfection is not at all possible with this thing. At least not with the tools available.

But (as I'm sure you know) better things are coming-- better continuous glucose monitors (that will hopefully be covered by insurance!), smarter pumps...

I was just telling Joseph yesterday how we're probably going look back in the not-too-distant future and marvel at some of things we used to have to do to manage his diabetes...

Hang in there.

Sandra

 
At 7:40 AM, Blogger Penny said...

I can relate with how you are feeling about the pump. My son, Riley, started pumping in March at the age of 3. And, to put it mildly, those first few months were hell. I wanted to throw the pump out the window sometimes. But, now, 9 months later, I can't imagine my life without it. I wouldn't give it up for anything. (This coming right after Riley's set went bad at his brother's ballgame last night and I changed his set in the bathroom while he had an icky sugar of 400)

When I was reading your post, I was thinking the same thing as Sandra. I'm not sure it's the pump so much as the disease itself that's causing those wacky sugars. We had those wacky sugars on injections too.

I think my problem with the pump in the beginning was just being unsure if I was doing it right, adjusting basals and getting the sets in right. Oh, don't even get me started on the sets! Also, I think I had in my head that the pump was going to make things so much better. And, in the beginning, the results were very disappointing.

Actually, Riley had a lower A1C on injections, but he had a lot more of those nasty lows then too.

If you'd like, you can check out my blog. Riley went on the pump in March '06 and I posted a lot about the pump around that time.

I'm sorry. I didn't mean to write a post of my own here. I just wanted to let you know that I kind of understand where you are coming from.

 
At 12:51 PM, Anonymous Anonymous said...

I can't begin to imagine the struggles that you and Susanne go through everyday, but this certainly paints a picture. I hope you will find a process that works for Charlie. All of you are in our hearts and minds constantly. Hang in there.

 
At 2:26 PM, Blogger Carey said...

Thanks, Penny. I will go back and look at some of your blog postings on the pump.

Carey

 
At 3:42 PM, Anonymous Anonymous said...

I can't imagine what it must be like for you and Susanne. But as with any struggle, I'll put my positive thoughts out there for reprieve to come out to you guys...

 
At 6:22 AM, Blogger Kerri. said...

Hey Carey,

I have been on the receiving end of nights like that and it's not even remotely fun. A persistant low is exhausting for everyone involved.

I did injections for 17 years (from when I was 6 until about two and a half years ago) and it took me a few months to completely adjust to pumping vs. MDI. For me, it was getting those basals tweaked that made all the difference. Curve ball on your end is that your boy is growing and changing, while I started pumping well after puberty.

I second Sandra's recommendations: I also add "Smart Pumping" by Howard Wolpert.

If I can help you out with any specific questions, fire away. You know where to find me. :)

 
At 9:14 AM, Blogger ScW said...

Been there and still doing that some. We hated our son's pump for months. Now I don't think we would seriously consider going back. But there are still plenty of tough days. Now that we've gotten the hang of things, and found what works, we've had 2 excellent A1C's in a row.

Hang in there... it gets better.

 
At 6:50 AM, Blogger Michele said...

I've enjoyed your blog - and wanted to pass along a couple comments. We have a Maeve too - she's almost 8, and was diagnosed type 1 when she was 4. We started her on the pump in May.

Here's what we do with Maeve when she needs a juice box at night. We don't even try and wake her up - we'd never win that battle. However, if we stick the straw in her mouth, we will drink down the juice like a champ. All without even sitting up.

Hope this works for you too.

 

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