The Early Bird Gets The CI

I was going to wait to post anything about Emmeline's CI surgery until her activation.  Is it me or is that taking FOREVER!!??  So activation will be getting it's own post.  
Emmeline was supposed to get her CI on June 3rd, I wont go into all the boring details, but due some infuriating run around by the ENT's office staff, insurance authorization didn't come in until June 5th.  This meant we got bumped to June 17th!  You can imagine what happened when this started to go down.  I am told I handled it well.  Interestingly enough when authorization did come through it was good starting 4 whole days before the 3rd.  
So, jump to the 17th.  We were the first slot of the day which meant we had to be in Fort Worth at 5:15am so we had to leave Denton at 4am.  I figured Emmeline would be less than happy about this but when I stopped for gas I looked back and saw this.  Pretty cute.

When we got there no one else was there.  Not even registration people.  Apparently they don't have to be there until 5:20.  She was still in good spirits.

I'm a little obsessed with before and after shots so here is the before of the left side of her head.

 Still thumbs up after putting on the gown.

I think the way her ENT marks the surgery side is pretty cute.

I am pretty sure she is trying to do thumbs up but they had already giving her "giggle juice" at this point.

I think she is trying to smile here.  She kept scrunching up her face and sticking out her thumb.

Her ENT told me to expect the surgery to take about 2.5 hours.  I figured that meant 2.5 of actual surgery time and about 45 minutes to an hour or prep time while she was out.  Her ENT is more than a little OCD.  His nurse said my estimate was good.  It ended up taking 5 hours cut to close.  Emmeline had a split/fanned facial nerve.  This is common in kids with CHARGE.  Most people's facial nerve moves through their ear area and into the face as one nerve.  Emmeline's came in as one but then split and twisted around her cochlea.  This is a problem because they need to put the electrode into her cochlea without paralyzing her face.  Luckily our ENT has some pretty rare experience with this and was able to go in the "backdoor" where her vestibular system should have been.  It takes longer though.      Placement looks good but we wont know for sure until her CT scan on Tuesday.

I try to pack light when at the hospital.  Especially when I am there with Emmeline alone.  It's hard to handle her and a bunch of bags.  Toward the end of the procedure an Audiologist  came out and gave me this beast.  It's a goody box from Med El for all new recipients.  I stuck my foot in there for scale.  I don't have small feet.  

This is how they left her with me.  She was pretty nice until she woke up. 

Then she started crying that the bandage hurt and the vomiting started.  She was really hungry and thirsty but since she had been under for 2x longer then they thought the anethstesia was really messing her up. She couldn't keep anything down for 14 hours.  

She perked up briefly while Facetiming with Josh and Isa.  Then she cried, all night. It was rough.

I asked them to take the bandage off as soon as shift changed.  Here's the scar.  It's shiny because he super glued it.

Back on the laptop.  You can see that the bandage was so tight it made her face all puffy. 

We got home before Isa got home from the sitter so Emmeline killed time looking at her goodies.  The little stuffed elephant has CI's embroidered behind both ears.  Her name is Mellie.  The piano is her second favorite.  Now we wait 3 weeks for her to heal before we can turn her on and she can hear something.

Here is all her exterior CI stuff.  This is a bluetooth device, 2 BTE processors, and one Rondo (it just sticks to her head), a battery recharger, batteries, a dehumidifier, a microphone tester, plus all the other non neutral colors for the battery pack!  Isa is pretty excited about those.  She really wanted the green. The idea of giving it all to us before her activation date (July 10th) is for her to get used to it.  The problem is she loves it and wants to hear now!   

Emmeline was THRILLED when Isa got home and this is about how far away she would let her get before she started calling for her.  She keeps stopping what she is doing every once in a while to sign "friend" at Isa. very sweet.  

Even though we hit the rather large snag of getting our initial surgery bumped we feel SUPER blessed through this whole ordeal.  These things really are amazing!


Terra said...

I have mixed feelings...I wish I could have been there to at least pretend to be helpful (even though I'm pretty sure you would have still done everything yourself), but that post op portion sounds really rough!

It's also really good that Isabella likes to smother children with love:)

Risë Harris said...

Thanks for posting all this, especially the pictures. I love that last one.