Update

(this should have been posted on January 17.)

A lot's been going on, my friends.

I don't even know where to begin.

Maisie was re-evaluated by a whole team of doctors -- a pulmonologist, a thoracic surgeon, an ENT, a child psychologist, a general pediatrician, a respiratory therapist, a Myasthenia specialist...I don't even remember who all -- on Wednesday. They all agreed that she is struggling to breathe over the vent, and the nurses who stopped in testified to how much she hates being on a ventilator. She works very hard and very deliberately to knock it over, disconnect it, even kink the tubing. 

The CP didn't really have much to say. She was there because there is a psychological component here since Maisie clearly hates the vent, but seems very confident that if Maisie becomes vent-dependent, she'll get over it. She also said that if Maisie would probably work hard to be off the vent and if the deciding factor is whether or not Maisie will do the work to breathe on her own, then she should be learning to breathe on her own again.

The thoracic surgeon had previously ordered an MRI on her lungs and after examining the images declared that her lungs are still healed nicely from the lobectomy three years ago. He was confident that her breathing troubles today have little or nothing to do with the missing lobe and doesn't think any more surgery is necessary.

The pulm agreed that what is left of her lungs seems healthy, i.e. nothing else has died. She has had a chest x-ray, a dynamic MRI, and a billion PFTs (pulmonary function tests) all of which showed clear lungs that are expanding less and less the longer the test goes on. Her dynamic MRI actually showed her diaphragm starting to shake with fatigue after five minutes.

The respiratory therapist and the Myasthenia specialist conferred for a long time over whether or not Maisie will gain the strength back to breathe. And the answer is still up in the air. The therapist and the ENT were sure about one thing: Maisie cannot be orally intubated any longer. Her trachea and lungs are torn up and bleeding and she will start to have other problems if we don't make a decision.

So here it is: Maisie got her trach early yesterday morning. The surgery went well. We are very hopeful that the trach is a temporary solution while Maisie's meds are adjusted and wiggled and we try to get her diaphragm's strength up again. The MG specialist has seen cases like this go both ways, and there's really no way to know what will happen until it happens.