Ready for surgery?

Bah – that’s a joke.  No one is ever READY for surgery.  Ellie is scheduled for the OR at 10:15am tomorrow morning.  We’ve done months of prep work to get her body ready for this day.  No, she will not be decannulated post-op.  It’ll take a while to get to that point.  But the plan is for her to come out with an airway that is normal for her size.  Are we ready for that?  Absolutely.  Are we ready for step 2 and 3 and 4 through 25?  Sure.  But step 1 right now is surgery… and surgery sucks.  Sedated procedures aren’t fun, either… but handing your child over for surgery is the pits. 

This is the first time Ellie’s had a surgery that wasn’t critical to survival.  OF COURSE she needs a usable airway if it’s possible… of course.  But her quality of life isn’t deteriorating by the day as we await surgery.  So… it’s a different boat for us.  A better boat, surely… but different.  Before, we didn’t have an option.  She was getting surgery or she wouldn’t be here.  Plain and simple.  Now… she’s thriving.  The risks associated with surgery are still minimal compared to the benefits of life without a trach… but it’s weird to feel like we’re “electing” for this.  It’s not elective surgery – she needs a stable airway just as much as the rest of us.  It’s not feasible to think she can go on with an airway that can’t support her for more than a minute when that airway can be fixed.  It’s just a mixed bag of emotions here, if that makes sense at all.

The road we’re ready for…

During surgery, they’ll place some of Ellie’s rib cartilage as a spacer in the back of her trachea to widen it.  They’ll also place a long piece of cartilage along the length of the front of her trachea.  This will both widen the subglottic area (the area that is so tiny right now) and support the front side of her trachea.  We found out two weeks ago that the anterior (front) side of Ellie’s trachea has collapsed between her voice box and her trach stoma.  Her ENT said this happens sometimes, especially with trachs.  So they’ll use a long piece of cartilage to reconstruct that portion of her trachea and give support.  They’ll also place a stent in to hold the airway open how they want it during recovery.  Three weeks later, she’ll go back in and have the stent removed (I assume this is just a sedated procedure).  Three weeks after the removal of the stent, we should (SHOULD) be able to start capping trials and let Ellie try out her new airway.  So at least six weeks post-op (think mid-September-ish).

Do you want to know what I’m most excited for?  I mean… other than not worrying about her pulling her trach out and turning blue in a few seconds??  I want to hear her laugh.  Ellie will be two before she’ll be able to be capped and we’ve never heard her laugh.  Take a second to let that settle.  That’s hard.  On the happy side… the kid laughs (silently) all the time… she makes the most adorable little face and tucks her chin into her chest.  Sometimes, she really enjoys herself and throws her head back.  But without the ability to make sound, she doesn’t audibly laugh.  My heart aches to hear that sound.  So that’s my focus going into tomorrow.  I have to hand over my very healthy (in her terms) baby… but I keep focused on the fact that when all is said and done, she’ll be able to laugh.  I can’t wait for that… I can’t wait to see the look on her face when she hears herself laugh for the first time.  We have so many exciting adventures awaiting us on the other side of this.  We need to learn to babble yet… to jabber and start to talk.  She skipped all of that developmentally.  She was so delicate when she was first here and barely made any sounds her first few weeks.  When she started to struggle at a month old, she just slept all the time.  She was trached at three months.  So all of that baby language stuff… we’re going to catch up on that soon.  All in good time.  Let’s laugh first!

Sitting pretty in her room... a little disheveled here. 

This was how happy Ellie was waiting for her procedure 2 weeks ago... cutie!