Your Guess is as Good as Mine - April 2

Everything is negative. There is no evidence of infection - viral or bacterial. The best guess for what happened is that she had a build up of CO2 in her system which caused her body to start slowing down. Once that was cleared out and her lungs got some help from the ventilator she was fine. That's the good news.

The bad news is that we don't know WHY it happened - which means that we don't know how to fix it or prevent it from happening again. ENT says it's more of a lung / muscle issue than an airway issue. The fact that Dr. G was able to intubate much more easily, and was able to see the vocal chords when she did, means that her airway is a lot more open than it was even two weeks ago so it's growing just like the rest of her. That also means that doing the mandibular distraction (lengthening her jaw) won't solve the problem. They're still going to call in the plastic surgeon for an evaluation to get her opinion and cover all of the options before we make a decision about how to move forward.

Our other "best" option is to insert a tracheotomy tube that can be used to give her lungs support with a ventilator, either constant, intermittently during the day or just at night to give her lungs and diaphragm a break. 

So at the moment we're operating under the assumption that her body just got tired and couldn't keep up. In the hospital she was never off of the breathing assistance for a long enough period of time to notice this as a problem, plus her body is bigger now which makes it harder for her lungs to keep up.

She'll hopefully be off of the ventilator tomorrow or Friday and we'll have made our decision on how to progress. In the meantime, she's off the sedation but not fighting the vent tube - she's been very calm all day...until they pull her hands back out of her mouth. She's not pulling at the tube as much as wanting to suck on her hands, there's just not room for both hands and the tube. But she is awake and alert and being nosy again and enjoying all the attention from all the doctors and nurses who have come by to see her :)

As Dr. H put it "We're sorry to see you, but we do love Baby Girl"