Updated Photos from Hospital

Here's photos of Alexis and our field trips around Boston Children's Hospital

We found a piano - it makes her very happy!

Here's Alexis resting with her animals.....

We found a big Minnie Mouse - but the gift shop was closed when we were walking around the hospital.

We got a super special doctor dog to help cheer on our recovery.

She got a little pooped out and is giving me the "Mom, I need to go lay in my bed..."

Alexis Post Op Day 1

We're here at Boston Children's Hospital.  Alexis remained intubated overnight because of the narcotic pain meds that she was one.  Alexis is a bit tricky - with codeine and morphine type drugs, she lowers heart rate, breathing rate and blood pressure.  So it was just safer to keep her airway safe and keep her resting comfortably overnight.

After shift change but before morning rounds, they (along with Alexis' help) took out the breathing tube.  She wore her CPAP for a little bit of time after that.

Pain management team came around and we all talked that Alexis would get valium for keeping her relaxed but then tylenol by IV for pain.  So far that has been managing her pain.  

We then rested a bit, then she wanted to sit up.  She played a little bit and then we were able to start some pedialyte via g-tube on slow-mo.  It's set for 10ml / hour which is like slow slow slow motion, but it's something and it seems to be making her more comfortable.  We've been doing bits of chest-PT as well to clear out any gunk that she might have gotten while intubated.  

Alexis and I cuddled some (and took another selfie).  

Then we both took naps.  

In-patient PT came to visit, so we will see them tomorrow.  Hopefully we can get up into her wheelchair for some wiggle time and maybe even see about leg braces/walking time.

Hopefully tonight will be boring, maybe we'll get to have some Compleat (Alexis' formula) via g-tube.  Then we can see where we go from here.  We have to poop before we leave, but leaving the hospital will be something considered after Monday March 2.  (Our badges say March 10 - hopefully we're not here until then!!)

That's all.

Catherine

Surgery #9 - Scoliosis Repair

Alexis had Surgery #9 today at Boston Children's Hospital.

She was here to get her ear canals cleaned of wax, then hearing test done.  Then after these were completed, she started her main reason for surgery - scoliosis repair.  

They were able to insert Harrington rods along her spine (one rod on either side of her spine) from L7 to pelvis.  Her curve prior to surgery was 85%.  There is still a swoop from where her spine was flexible enough to get adjusted into place.  

Here's a photo - before on the Right side, after on the Left side.

She's in the ICU - still intubated and most likely staying that way until tomorrow mid-morning.  She challenged them for intubation and they'd rather her sleep comfortably tonight than to risk extubating and then having to emergently re-intubating.  

Also when she was on narcotics after her cleft palate surgery, she didn't maintain breathing and heart rate well - so having the extra support from the ventilator is good for her body.  I probably won't agree with this decision after mid-day tomorrow and will lobby harder for the tube to be removed.

She's resting comfortably and hopefully will get back to her usual feisty self tomorrow.  

Thanks for all of the thoughts - we are powered by the fierceness of Alexis' fight.  And we can't wait for her to wake up and start giggling.  For now, we wait.