Thursday, June 9, 2011

Preventive Maintenance

When I was in college, learning how to operate and repair massive ship engines, I'm pretty sure that one of my textbooks had this same title.

That was such a lifetime ago.

But what's interesting is that, even though I surely do not remember half of what I once learned, the principles still apply today.

I always think of that parallel whenever we take Playette to see the Pediatrician or some specialist. Almost every time we have an appointment, it's not because she's sick. It's just preventive maintenance.

There's a list that parents and doctors use when it comes to kids with T21. It's a reference guide of what needs to be done and when. We all know the deal, more or less.

Thyroid checks regularly, along with CBCs (I always ask for a "manual diff", which makes medical professionals think that I'm one of them, but really I just heard it said when Playette was a newborn and it stuck with me).

Then there are neck/spinal x-rays for AAI as well as tests for Celiac Disease that start at about age 3.

Most of us find it pretty typical stuff to see a Cardiologist, Endocrinologist, Audiologist, Ophthalmologist, and ENT, even if our kids aren't showing symptoms of anything.

It's just what we do.

So, in that vein, it was recommended that we get Playette a Sleep Study. Now, you may be wondering, "Haven't you done that already?" but no. That was a Swallow Study. Twice.

Orrrr you may be thinking of the non-sedated EEG we did more than two years ago. Similar goop in the hair, but looking for something totally different.

This most recent test, which we have attempted to have done in the past and never really got there for one reason or another *coughINSURANCEcough*, came about after the last ENT visit where it came up, again, that Playette snores and fidgets in her sleep. In and of themselves, not such a biggy, but when you add in that extra chromo, it means that a sleep study is in your future. Sleep apnea is not uncommon in the Ds community and you can also get info that may lead you down the path to a Tonsillectomy and Adenoidectomy (T&A).

So that's what we did, as a family, on Tuesday night.

Because we're all about being miserable together.

No one escapes.

It wasn't too bad, actually. I mean, we were all sleep-deprived the next day, but there are much worse things.

We got there at 7:30pm and left at about 6am. It took some time to get the machines or whatever (I have no idea since they weren't in the room with us) going and then more time to stick all the electrodes thingees all over Playette's body.

It was kinda like watching the making of Thriller.







She was much more agreeable than I expected and we were actually glad that we did it now, when she could be amazed by the process and not just 100% irritated. She did try to take the one off of her foot for a while and the final straw of sticking something up her nose was met with some distaste, but all-in-all? Not horrible.

Even though, personally, I thought she looked hilarious. I wish I had gotten a picture before the hole was cut out over her face. That was classic.

Playette seemed like she was ready for bed at just the right moment, but that didn't last. It was if, all at once, she remembered that she was in a new place and there was no way she was going to sleep through the party.

Even though that was kinda the point. To sleep.

BD and I tag-teamed until she finally passed out.




And then something in the room set off my hacking cough so BD made me get up and take the other bed while he took my place sharing the one with Playette.

Because doing this once is one thing, but doing this twice? Uh-uh. We weren't trying to go out on a technicality.

This one is going in the books as a mission accomplished even though the results won't come back for a couple of weeks.

=====

For those that wondered, the second hospital visit that morning was for me. Just an appointment. Nothing to be concerned about. BD had taken the day off so he was lucky enough to sit through it all with me.

4 comments:

Alison said...

Oh my goodness, what a cutie, even with all the wires stuck to her! And what a good talker! I'm amazed that she was able to go to sleep. I think the weird stuff stuck to me would have thrown me off my sleep vibe.

We haven't had to do this test yet, but it may well be in our future. We have eye and ear exams in the next few weeks, and also the neck x-ray.

LLPirate said...

Wow you guys sure know how to have a fun Tuesday night! Great photos and video. Hope the results come back negative.

Tracy Moring said...

What a trooper. She is a "Double Smith" indeed!

Lisa said...

Oh, jeez. Laughed so hard at this one. Sorry. Pics are just TOO good. Oh, and, "we're all about being miserable together." I feel ya.