Day 10 and 11

Addy had a great day on Tuesday.  We kept her on the full face mask all day which has definitely seemed to help. She has not been fighting it which is nice too...I think she was so happy to get the vent tube out that she didn't care what kind of mask she had on.  Yesterday she had chest physical therapy (CPT) every 2 hours which made the world of a difference.  They continued that through the night and her stats are showing us that it's working!  I'm so glad that the Hospital staff is listening to us and Dr. Schroth now and doing what her protocals says!  James said that Addy had a great night and didn't seem to mind the every 2 hour CPT session.
So far Addy has had a good morning!  Dr. Kayrouz and her RT wanted to give her breaks from the full face mask today so we are going to try 2 hours on full face, 2 hours on nasal mask throughout the day.  Obviously if we feel she needs the face mask more we will stick to that!  She has been on her nasal mask for 1 hour now and seems to be doing good (she's finally taking a nap)!  Her RT had to bump a few of her pressures up on her breathing machien just to help her out a little but nothing to crazy!  We are definitely taking baby steps forwards and James and I are ok with that...one day at a time, baby steps works for us as long as we are moving fowards and not backwards! 
We got some great news this morning and it's that Addy is FINALLY getting the Trilogy!!!  We have been fighting for this machine for months now and it looks like it's finally coming!  Addy's PICU doctor and Dr. Schroth both felt that Addy needed the Trilogy before going home.  Our DME was not offering the machine but a few weeks ago bought out a company who had the Trilogy.  They are not getting educated on the machine until May 5 so they said in Addy's best interest it would be best to get the Trilogy from another local DME's office.  Many of you are probably wondering what the Trilogy is and it will be her new breathing machine.  It can be used as  BiPap (which is how we will use it) or as a Ventilator.  Because it can be used as a Ventilator is has a battery life which is HUGE..now we dont' have to carry a battery or inventer to run her Bipap.  It is much smaller then the BiPap and it has settings on it that her BiPap can not do.  The Trilogy is made by the same company that makes her nasal mask so the two work hand in  hand together which helps make the "leak" gone!  This is such great news for Addy and we are sooo glad to finally be getting one for her!!