Decisions - April 3

The plastic surgeon came by after I left today but called while I was waiting to pick up the girls. She is in agreement with Dr. G and the ENT - there are a lot of things contributing to Baby Girl not being able to breath comfortably: small lung fields, even with the surgery her diaphragm isn't 100% how it should be, small jaw, shortened neck, tight airway and tongue placement because of her jaw. She feels the mandibular distraction, while it would help, is not the best solution to giving her a secure enough airway that she can come home and not have to worry about ending up back in the hospital. 

The general consensus is that the tracheostomy is the best, safest, most reliable option that we have. Tracheostomy procedures are atill considered major surgeries, and she will need even more careful attention afterward to prevent infection, but they are also reversible so as she grows and her airway is a little more stable / secure it can be taken out. The Plastic Surgeon also mentioned that at some point (probably around 2ish, when they remove the trach) Baby Girl will more than likely still need the mandibular distraction, but at that point it will be more for assisting with eating and swallowing issues, and jaw alignment, than for having a safe airway. 

So that's where we're at today. PT did come by today to work on her stretches. They removed the ventilator so she's back on just the nasal cannula and is doing fair - her blood gas labs show slightly higher than normal CO2 levels but they don't want to risk her developing pneumonia on the ventilator so they're just going to keep a really close eye on her. Dr. G had mentioned making a decision and getting it scheduled for early next week so we could be back in the OR as soon as Monday or Tuesday. In the meantime, she's comfortable and resting...and enjoying all her nurse friends visiting still :)