Friday, June 22, 2012

Where Do We Go From Here?

I'm a planner.  Have I mentioned that before?

I like to have a plan.  So imagine my discomfort in not really having a plan for getting Abby's trach out.  To avoid false hopes, we would answer, "Ohhh, after she goes to school" if someone asked when she might be able to get it out.  It was just easier that way.

Well, noooooooooow, we have a plan.

And I. LOVE. IT.

After Abby has been successfully off of the vent for a month, we'll start capping her trach.  This is when we put a little plug in it so that it's not being used at all and she has to do everything through her nose and mouth.  It's awfully nice to know you can just pull the plug out if she struggles though!  I have strategically scheduled her ENT appointment for almost exactly a month from today so that we don't waste any time!

Once she caps successfully while she is awake (which depends on Abby, but our ENT thinks this will be a quick process), she will go for another sleep study where she will be capped while she is asleep.  The results of this study will determine our next steps, so this is where I feel like I am writing one of those "you determine the end of the story" books.

If the capped sleep study is awesome with no issues, Abby will be ready for decannulation, which makes me sound fancy, but it really just means taking the trach out.  This doesn't usually happen in the winter because it's cold and flu season, so we'd be almost just setting her up for failure.

If the capped sleep study shows obstructive sleep apnea, which is when Abby stops breathing because there is something--her tongue--blocking her teeny little airway, then things get a little more complicated.  Abby will most likely have a jaw distraction, which I have mentioned in a previous post.    It's not a fun surgery, but it may be necessary if she wants to breathe without a trach.

Once that surgery is done, then Abby will hopefully decannulate. It just adds an extra step to the process.  Either way, we also know that she will have her tonsils and adnoids removed before the trach is taken out.  That is pretty standard, just to clear the airway as much as possible.

We're looking toward decannulation in about a year--or possibly even less.  Yippee!!  It is still rather surreal to me that Abby is no longer on the vent, much less that we are discussing decannulation at almost every specialist appointment we have.  Wow.

And here's a sweet picture from her MW stay.  Just because I love you and I know you'll love it!



Becca said...

Yay for a plan. And yeah, she couldn't be more adorable.

Darryl said...

So Exciting! Who would have ever expected when she was born? Can't wait.

Heather said...

What a beautiful miracle!

Pat Hetzler said...

I can't help but think that a lot of Abby's progress has been the result of really wonderful parents working along side Abby and encouraging her. Of course, God had a large part too!

Debbie said...

I second every comment above!! BTW, the pic of Abby w/her doll (Beth isn't it?), is simply adorable.