Skip to main content

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!


  

Comments

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.

Popular posts from this blog

Cerebrocostomandibular Syndrome

If you happen to pick up the latest Reader's Digest, there is an article in there about Piper Breinholt , a four year old with CCMS.  If you've been around here a while, you'll remember wayyyyyy back when we first received Abby's diagnosis that I was able to speak to Piper's mom, Reagan.  The article is more about their story and not as much about the ins and outs of CCMS, but I think it's probably enough to get some people googling it and I'm hoping a few will end up here. Every once in a while, I give a blog post the title of Cerebrocostomandibular Syndrome so that it would show up in Google.  My ever-present hope is that people will stumble across my blog and 1) be encouraged by the hope we have in Christ, 2) feel a connection with someone in a similar situation as them, or 3) get excited over the miracles that have been performed in Abby's life!!  (a combination of all 3 is great too!)  :)   Notice that it's not to get famous and it ...

Bath Time Photos!!

As promised, here are lots of photos of Abby's first bath. Caleb was supposed to be in bed, but the bathroom is right next to his room... "I'm not too sure about this..." Once she learned how to splash, she was all smiles! Her first good hair wash! Gotta protect the trach! She really liked getting water poured on her head.  It was cute! Smiley (and bubbly) for Daddy while he dried her off. All clean!!  (Note the Lysol wipes in that last picture.  They are NEVER far away!)

Imagination Movers Photo Recap

Seriously, The Imagination Movers were so much fun!  They played lots of their own music, with some classic rock mixed in for the adults.  There were also quite a few jokes and references to Baltimore, which was kind of fun.   The whole night centered around this robot named Rock-o-Matic, or "Rocko."   This is Mover Scott, and he wears Wobble Goggles that help him see new ideas.  Caleb and Abby have a pair of goggles too.  :) There are 4 main Movers that are part of the TV show, but they have 2 extra movers to play instruments and do back-up vocals in their live tour. Abby finished up her feed before the show started so that she would be free to dance! My dancing queen did NOT want to sit in my lap.  The row in front of us was empty, and that is where she stood almost the entire show--dancing the night away. My Imagination Movers  Caleb did his share of singing and dancing too.  He knows m...