The Good, The Bad, and The Not-So-Good

When last I posted we were pondering the question of whether or not we could (or should) get the Guardian RT Continuous Glucose Monitoring System for our son. As I said before, this would be a huge financial hit, requiring some sacrifices. But if it could make things a whole lot better for Joseph, then yes, it would be well worth it.

So, can we swing it?

Maybe.

That's the best we could come up with so far. There's still a lot of financial dust that has to settle post-Christmas before we can make a final determination. In the meantime, I do like the suggestion made by some who commented-- that we should try to become some kind of test case for Medtronics. Not sure if that's even an option, but definitely worth exploring.

Which leads to the second question: Should we even do this right now?

Again, maybe.

I think the pros of getting the Guardian are illustrated quite nicely on Printcrafter's site.

But what about the cons? Well, a few things came to mind as Ryan and I reviewed Medtronic's literature (oh, they were fast-- emailed fact sheets within minutes of our phone chat; brochures via "snail" mail the very next day!).

First, the psychological factor. How will Joseph feel if he has to wear yet another device; insert a second catheter? Will alarms going off at school draw unwanted attention?

Second, this is a brand spanking new technology. Do we want Joseph to be one of the first few children actually using it? Would we rather wait for all of the kinks to be worked out before making this leap?

This morning, armed with these questions, head swimming with the possibilities of this device, I took Joseph in for his three-month endocrinology visit.

First off, the good news. Joseph's A1c was 7.3.

Given all of the insane highs of October and much of November, I was surprised and pleased that he was up only slightly from the previous visit. Joseph's endo reviewed our logs, and thought our recent basal changes were just the ticket. Joseph's late November/December bgs (with a few exceptions on the weekends) have been looking really, really good. She suggested we do an at-home A1c test in six weeks, saying "I think you'll see an even lower A1c."

Next up, a bit out of order here, the not-so-good:

When Joseph took Evan out into the waiting room, the doc and I chatted about the Guardian. And at first it seemed a no-brainer. Joseph's endo thinks the device is phenomenal-- well worth the out-of-pocket cost. That, despite how it's being marketed, it will essentially replace finger sticks. She also thought that Joseph could truly benefit from it, since we need to test so often.

But then we discussed potential problems with the device, and she agreed with my concerns about the psychological issues of wearing the Guardian at school. She then added that the inserted wire could very well jeopardize the integrity of his already limited infusion sites (Joseph is very lean and can really only use his hips and abdomen). This could be a BIG problem for him in the not-too-distant future.

Now, the endo did say that Medtronics is working on a way to use one catheter for both insulin infusion and glucose sensing.

But who knows when that will be available? Clearly, we need to do more research here.

Okay – a bit of a breath here.

Now for the bad.

Joseph's height and weight have pretty much leveled off from three months ago. He's still in the normal range for his age-- between 50th & 75th percentile for height and 25th & 50th for weight. However, the leveling off is not good. I asked if two months of outrageously persistent highs might be responsible.

"Yes," she said, "that could be the case."

"However," she went on, "there could be something else going on here. Something involving another endocrine function."

"Oh."

She then asked me to bring Joseph back within the next month for a first-thing-in-the morning blood draw in order to: test again for celiac; check his thyroid function; measure his "insulin growth factor;" and test for some other things I didn't catch because I simply couldn't hear the words anymore.

I wanted to cry because this is my son. And I can't just provide him with food every day, and know that he'll grow.

And we can't just be glad that we're doing all right. That he's doing fine. No, because now my son is not growing.

I just don't know how this can be.