Monday, September 26, 2011

a break

We've been taking Caelan off the c-pap for some short trials.  He's been doing really well... Actually he kind of reminds me of that nursery rhyme...

There was a little girl,
who had a little curl.
Right in the middle of her forehead;
When she was good,
she was very, very good,
and when she was bad she was horrid.

Yep. That's Caelan. 

Well, except he's a boy.

He does GREAT off the c-pap, but...
and it's a BIG BUT...

If he gets upset he just can't catch his breath.  He becomes increasingly indrawn and has to work extremely hard to breath.  It's unsettling to watch.  It also takes him quite a while to recover from these 'episodes'.   We're hoping that over time he'll get stronger and more comfortable with this new breathing thing and be able to manage these fits better.  The alternative, if he doesn't, is to head back into the operating room and widen the opening of his vocal cords.  It's a wait and see what Caelan does.

It's taking quite a while to get the narcotics and sedatives out of Caelan's system.  Which might be part of the problem.  Were hoping that the more he wakes up the better things will go.  He's still very dopey.

As much as Caelan has his eyes open during more of the day, there's still very little of 'our Caelan' shining through.  He's what you'd call expression-less.  No reactions to anything.  It's just a flat face, no smiles, no cheeky grins, nothing.  Disturbing really for such a happy boy.
(Note:  You can see the imprint on his cheeks from his c-pap mask.  We're trying one that is supposed to only cover his nose, but often slips over his upper lip too.  The patches are duoderm (?) -they're padded plasters that protect his skin from the masks.)

Check out that bare neck!!  I still can't get over it...


  1. I think I'd be expressionless too....or just plain pissed! It is incredible to see Caelan's neck bare and I am hoping for all of your sakes that it is just those nasty drugs playing havoc on our normally smiley friend and that once the nastiness is out of his system all of the rest will kick in....smooth steady breathing and SMILES!Please let us know if you need anything. We think of you every day. Hugs, Heather, Graham and Logan

  2. ps. Did they mention to you about depression? I know it seems silly BUT with cardiac kids they go through this following surgery so I was wondering if it was the same for Caelan. Emotions have a big role to play in breathing so maybe he is just feeling sad, mad and fed up (all normal feelings for anyone after surgery). I know I am searching in the dark but thought maybe this was one scenario which will simply improve with more time (not that that is any comfort right now) xo

  3. thanks for the pic's...he looks wonderful! I know he's got a long way to go but look how far he's have an amazing boy (not that you need me to tell you that!) keep up the great work you guys..
    PS: look great my the neck picture