Update

Not good news. Lillian was unable to have her stoma closed bc her airway has narrowed. She has quite a bit of stenosis. They said her airway was small for a three year old and they could just pass a neonatal tube into the airway. Next week, they will do a procedure that is essentially an angioplasty in her airway that will microfracture the tissue and hopefully cause it to stay open to the size it should be. This procedure may or may not be effective. They may have to repeat it up to four times to consider it a failure. They will try the first one next week, date to be announced...she will have to stay in the hospital overnight. If it does not work they will bring her back in two weeks and try again. This will repeat up to four times if necessary. If it does not work....they will have to do a bone graft to rebuild the airway up to the size it should be. I was totally unprepared for this outcome. Totally. Not at all what we hoped for. She was supposed to go back in to surgery at 1145 but they didn't take her back until almost 2. We have been home now about 15 minutes and I have a very big headache. Thank you for continued prayer.