D.B.
I'm sorry that she - and all of you - are going through this. I'm happy to hear that you are at a children's hospital. If they haven't already, ask if they will set up a team leader/coordinator for all the doctors and any therapists (PT, OT, Resp, etc.) to collect all the info in one place and also to advocate for the family. Usually that's a social worker but it doesn't have to be. Also, please start a 3-ring binder with reports, printed images, etc. Put in those index tabs to separate by speciality or at least by medical/lab/imaging. Put some regular notebook filler paper in each section and put a few pens in the pocket. Jot down everything, with dates and who you spoke with. It will help a lot. Give this, when possible, to the most objective or at least very calm and organized person in the room or at each appointment. It will help make sense of all the info coming at you from all directions.
Good luck!