Monday, October 27, 2014


Abby had lots of appointments today (more than we originally thought, it turns out!)  We were up at 5:30, got Caleb to my parents' house at 6:30, and were at JHH by 8:30.  Early morning!

First we saw the anesthesia pre-op center to get her approved for anesthesia.  Sometimes we can go to our pediatrician for pre-op, but JHH wanted to see her because this is a big one that could impact the airway.  It went fine...another opportunity for us to educate people about Abby's interesting anatomy!

The nurse practitioner sent us to get blood drawn, which is always fun.  Thankfully, the phlebotomist listened to me when I said that her hands might look great, but they never actually get blood from them!  She also got heat packs when I requested, which really helps to draw out the vein.  This is the first time ever that blood was drawn on the first try.  Yippee!!

Our next appointment was for Abby to get a CT scan.  The tech grabbed the board they use to keep kids still, saying there's no way she will be still for this.  I asked if we could try it without the board (she absolutely HATES being strapped down!) and he glared at me.  I let him know that this wasn't her first CT scan and that I know she can be still because she's done it before.  He reluctantly agreed (preparing his I told ya so speech, I'm sure) and we started the scan process.  I know my girl.  She was totally fine, earning herself a lollipop and some cookies!

After going to the cafeteria for lunch, we headed back to the Facial Surgery department for an appointment with her surgeon.  Turns out, we were actually meeting with the entire Jaw Clinic, which meant we saw a speech therapist, geneticist, dentist, orthodontist, and our surgeon...who is really the one person we needed or wanted to see in the first place!

We did get some great information from our surgeon.  Here's a diagram of what the metal bars inside her jaw will look like.

  fingers holding ear tube

Abby will have external screws coming out toward her ears for several weeks.  We will turn them twice a day to extend her jaw.  The goal is to extend between 10-15 mm.  When the extension is done, Dr. K will cut the screws off at the skin and the internal bars will stay in until late February.

The plan is for Abby to be in the hospital for 10-14 days, depending on how well she does. She will be intubated and sedated for at least 6 days before they attempt to take the tube out in the OR.  If she doesn't tolerate that well, the tube will be put back in and we will try again a few days later.  The concern is that the swelling will cause her airway to be even tinier than it already is.  We plan to play it safe and make sure that everything is very structured!  I love that our doctors here feel the same way and have everything so carefully orchestrated.  Our wonderful ENT will be in attendance at both the surgery and the extubation attempt in case Abby gets into any trouble.  (He will also be working on her ears during surgery, to hopefully correct all of the hearing issues we have had in the last few months!!)

So...we're all set for surgery next Wednesday.  It's another big one with its own set of risks and concerns, so we certainly appreciate your prayers.  I'm starting to pack now! :)

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