Wednesday, March 30, 2005

Happy Birthday To Me, 6.1 a1c! Or, How My Heart Broke

My diabetes friends know what a 6.1 a1c means, and they are already doing the a1c happy dance while the rest of you are looking around confused, like, WHAT DID SHE JUST SAY?

Yes, it is my birthday today~and yes, my son had his quarterly endocrinologist appointment yesterday. The a1c measures how much glucose has been floating around in his blood vessels over the last three months. The lower the number, the better. 6.1 is very good.

This number was a surprise to me! I didn't think his a1c was going to be so hot, as we've had some issues with "sneaking" candy and not telling me... THREE TIMES in the last TWO WEEKS he has done this, with resulting blood sugars of 250-350 (normal range is 80-120). Not, not, NOT good. Consistent high blood sugars are what cause the complications~blindness, kidney failure, stroke, amputations, etc.

My son can have sweets if he would just tell me. Then he can take insulin for them, or work them into a meal plan. It's not telling me where we end up with the problems. ***SIGH*** I've been really frustrated, I've worked REALLY REALLY hard tweaking insulin doses all day long (he gets a different insulin/carb ratio with every meal, because I had observed postprandial highs or lows and logged and analyzed them and did something about it.)

It's been so tremendously frustrating, discouraging and disheartening to see these high numbers despite all my hard work at keeping tight control.

Well, after thinking long and hard, I became DETERMINED that he understand how important good control is. A friend of mine's husband died at age 39 from complications from poorly managed diabetes. His kidneys went out in his 20s and it went downhill from there. This was an excruciating experience for all involved, including their young children. And she said the one thing her husband always said to her was, my mom never told me... she never told me what could happen...

And I never want anything at all like that to happen to my son.

So... two nights ago we discussed complications for the first time.

It was the hardest discussion I have ever had in my life. Harder, even, than the birds and the bees discussion. WAY, WAY harder.

For a long time, I really resisted the idea of talking to someone that young about the complications, because they are really scary. They even scare ME.

But I did frame the discussion positively as in ~ these things won't happen to you, as long as we take good careful care of your diabetes ~ but they COULD happen if we don't watch out. So let's work really hard to keep track of your numbers, count carbs correctly, and dose correctly! Then we'll be healthy and lead a good, long, healthy life!

We did not talk for a long time, only 5-10 minutes. Still, each and every word I had to tell him broke my heart a little.

It had to be done, though; he has to hear about it sometime. I don't want him to worry his little self any more than he needs to, but I'd rather have him suffer from worry at age 8 than suffer from dialysis at 38. The end result is that he is now 100% onboard with keeping blood sugars in range. He may be a little less innocent about the reality of managing diabetes, but HE IS ONBOARD, AND THE PATIENT NEEDS TO BE ONBOARD.

This was really hard for me to do, but he seemed to take it well. Even as we were driving to the endocrinologist I was second guessing this decision. I wanted him to be innocent of all this, but there is a difference between innocence and willful ignorance.

In the end the appointment went well. The endocrinologist said this isn't uncommon for children to eat food that requires insulin and not to tell anyone. And he said it is never too early to broach the subject of complications as long as the idea is framed as an incentive and not a threat. The prime concern is the child's longterm health.

Still, I hate that my son has to grow up so fast.

HOW-EVER {deep, shaky breath-->stop all that self-pitying bullshit, Martha! slap slap slap}...THERE IS GOOD NEWS, some really great news. He will most likely be able to get an insulin pump by summer!

NO~dear, darling, sweet, nondiabetes friends, THIS DOES NOT MEAN THAT A MAGICAL AND SUPERSMART COMPUTER FIGURES OUT HIS BLOOD SUGAR AND INSULIN DOSE EVERY TIME. It does not mean he gets to stop the 10 finger-pricks a day he does to test blood sugars. We still have to continue thinking like a pancreas. Ever tried it? 'Tis a challenge.

BUT, having a pump means a site change (ONE stab~yes, a hurtier stab, but ONLY ONE) every 3 days rather than 4-5 shots each and every day. It means being able to go get Baskin Robbins after school without it meaning a special additional insulin injection. Instead, he types the number of carbs into the pump and WHOOSH the pump delivers the insulin automatically through a tube that is already sitting there under his skin.

The ONLY downside it is a huge, big thing to learn. I hear that you feel like throwing the pump out the window of your car, then driving over it, backing up over it, driving over it again, etc., for at least a month. Then, you'll wonder how you ever lived without it.

So there's no way to make the change before summer since I'll be touring for the book for most of May. But it is just as well since insurance can take up to 12 weeks to grant you the pump. Not THE MAGIC PUMP, just the pump. But a very good device that, I hear, will restore some spontenaeity to our lives.

So, it's all good! Happy Birthday to Me, with a GREAT a1c! {BIG SMILE}

And, I hope there are MANY, MANY more like this one.