Wednesday, January 18, 2012

Sleep Study or No Sleep Study?

So, to add on to my last post - Harlie spent FORTY minutes in the bathroom at school today.  FORTY.  In a ROW!  So, she went from having diarrhea to being constipated.  With no help from me.  Meaning, I didn't give her anything for her issues.  I've been there, done that.  I speak from experience when I say her having diarrhea is far less stressful than her being constipated.

So, I don't know how that happened.  She's still on her antibiotic, too.  Weird.

Poor thing missed out on FORTY minutes of her special education classroom time.  And let me tell you - that time is valuable!

And, quite frankly, poor ME for having to stand there waiting.  For FORTY minutes!  

It's all over now.  She's good.

And to make this sickness stuff even better... as is often the case with trached kids - it's perfectly timed.  And my trach friends will agree.  They always seem to get sick before a procedure or surgery.

Months ago I scheduled a sleep study.  And it's Friday night.

I don't know what I'm going to get out of it.  And I've been waffling back and forth about whether to go through with it for months.  My decision might be made for me if she isn't 100% soon.  And I mean really soon.

Here are my reasons why I think we should put her through the agony of a sleep study:

1.  She can wear her cap for most of the day, most days (as long as she's not sick, of course).

2.  Should we put her through another jaw reconstruction without just checking to make suuure that it's completely necessary for decannulation (getting the trach out)?

3.  Maybe there's something I need to know, that I don't know I need to know.

4. She can lay on her back on the floor with her cap on, and still breathe.  But she can't while sleeping.  Is there another issue of which I'm unaware?  Or does she consciously work harder to breathe while awake vs. sleeping?

5. I want her to have the blessings of her ENT to be capped.  Yes, I've been capping her for months.  But, he doesn't know that.  And that makes me feel very bad.  But, sometimes as a Mom, we just know what our kids can handle, even when there's no real evidence that they can.  And sometimes, even stranger, there's actually evidence that they can't handle it.  But, I just know that the evidence wasn't completely accurate.  She was in a room full of people and she wasn't able to fully concentrate on breathing when he tested her with that gauge thingy.  So, I want him to see that she can handle the cap.  Which means I will have to come clean and tell him that we have a cap and have been using it and that I'm bringing it with me.  I'll do that tomorrow.  Or Friday.

Here are the reasons why I think I'm going to regret putting her through the agony of the sleep study (if we can go through with it):

1.  I know she can't sleep without the trach.  But of course there's a wee tiny bit down deeeep inside that has an ounce of hope.  I guess it's better to know for sure then to be left wondering what if.

2.  We're going to go up there, go through 45 minutes of taping, glueing, and torturing her (wire leads everywhere) to put her cap on for 30 seconds (which is longer than I can take of hearing her struggle in my own tests here) to realize that she can't breathe with it on.  She will then sleep the rest of the night as usual (which is usually good, by the way - or at least I think it's good) and we will gain no valuable information whatsoever.  I, on the other hand, will have a crappy night's sleep knowing some complete stranger is up watching us sleep.  Creepy!  I think I've seen a similar plot in an episode of Criminal Minds...

3.  It's in DC, on a Friday night.  Which I scheduled on purpose so she wouldn't miss school.  But, now I'm questioning that logic.  Friday night drinks or Harlie's education?  Again, waffling...

4.  I have to take her by myself.  They will only allow one parent to stay.  I guess to make them more vulnerable.  I really need to stop watching Criminal Minds.  Seriously - the drive there and back is what I'm really worried about.  Well, I'm not worried exactly, it just sort of stresses me out.  If she needs to be suctioned, I'll have to pull over on 95.  And you know I'm going to be in the fast lane!

So, there seems to be more legitimate reasons for going through with it than not.  More than likely it will be a big fat waste of time and energy.

But, hope is a funny thing.  It doesn't take much to make you go through some crazy stuff.

Thanks!
~Christy

1 comment:

Ann said...

Not an easy decision for sure. I say you may as well go through with it because if you don't, you'll just end up re-scheduling at a later date because .... hope IS a funny thing.

xoxo