Wednesday, November 30, 2011

I'm not sure how to write this post.

Caelan is back in the OR this morning.

My heart's in my throat, my nerves are fried and my stomach won't settle down.

The last time Caelan was in the OR he coded and I'm terrified of hearing that PA system turn on again.  It would be one thing if you heard the click and they started talking immediately, but there's always a pause.  And that pause just about kills me. 

Waiting.  Waiting is hell at CHEO.

So Caelan is back in the OR and we are waiting.  yah.  sucks.

They're going to do a bronchoscopy.  That's what they had planned on doing the last time before Caelan showed them his alternative plan.

The results of that bronchoscopy will determine their plan of action.

We were forewarned yesterday.  We knew it wasn't going to be good because Dr. V (ENT) brought us into a room for our pre-op chat.  A room is never good.  If the conversation can't be handled at bedside you know it's going to suck.  I really didn't want to go with him.  We had a good idea where this was headed and it just sucked.

Basically, if they see something that can be fixed, something wrong, something that will explain all the airway trouble that Caelan's been having they'll fix it and we're all happy as can be.

Is this what they expect?  No.

What's expected is that everything will look exactly how it did the last time.  Everything will look great, his airway nice and open and all just like they want it to.  Unfortunately that doesn't explain Caelan's difficulties in breathing.  For that reason Caelan would end up with another tracheostomy. 

We know that the decision to start this entire process of decannulation was primarily for our family life.  The difference it would make is incomprehensible.  For Caelan though, he went from having a perfect airway to an okay one.  He's made it very clear that it just isn't working for him.  His trache did work for him. 

Now, I'm just trying to accept that. 

In the interim though I'm really, really hoping that they just find some obstruction that explains all our troubles away.


  1. Okay. One step at a time. Get through the waiting and then deal with the information when it comes. Whatever is best for Caelan is the right answer and you both will know what that is. Caelan is an amazing boy who has overcome much adversity. All we want is that beautiful smile back too. Best of luck with this day and with what you might have to face today. Lean on each other and know that we are all with you today surrounding you with love and support.
    Jo XXOO

  2. Love you guys, thinking and praying for Caelan and your family!
    Pam XOXO

  3. He's strong and beautiful - he will make this work on his terms remember. It's Caelan's way or no way...
    Hug each other. xox