End of Day 9

Addy was successfully Extubated Monday morning around 11am.  They kept her on her full face mask for 2 hours and then switched her over to her nasal mask.  As the day went on Addy did great.  Her numbers were holding steady and she seemed to reall be tolerating being "vent free"  I ended up leaving the Hospital for about an hour and a half last night to go to Bonsack's Art Show.  When I left her stats were perfect but when I came back not to much!  The RT and James had evidently broke up some type of secreations/plug so her oxygen stats were in the high 80's lower 90's (not terrible but not great either).  To make a REALLY long story short the RT was concerned that with too much suctioning and using her cough assist machine we were causing "Atelectasis" to return so James got on the phone with Dr. Schroth to see what we needed to do.  Dr. Schroth and Dr. Powell talked on the phone and got a plan in place.  The staff here wanted Addy's bed elevated but per Dr. Schroth it is now flat (she explained to the DR that SMA kids need their beds to be flat...she can't really explain it, it has just been shown to work),  Addy needed to be back on her full face mask with certain BiPap pressures and Chest PT EVERY 2 hours (if needed)...not every 4!  Dr. Powell also ordered an X-Ray at about 12pm and after seeing that we saw that yes Atelectasis had returned some BUT it wasn't from what he RT had said (Dr. Schroth said it was because her settings were wrong when she was Extubated and she had been on way to much O2).  Evidently everything extubation procedure is completely opposite when dealing with SMA and since the doctor's here so see SMA everyday they didn't know.  Dr. Powell came in about 1 am to see Addy to make sure everything was ok (she said she just couldn't sleep until she saw Addy's stats and Addy, for herself).  Here's where we are at for now (without talking to Dr. Powell this am).  She is going to stay on her full face mask for 24+ hours, Chest PT (CPT) every 2 hours unless Addy's resting and then it's at the 4 hour mark, and I guess we will see where we go for there.  If she has to be Intubated again James and I will definitely consider transfering  her to WI to Dr. Schroth!