Sunday

Sunday turned out to be a much better day. We had the picky nurse that I have talked about before but she is also a straight-forward nurse that gets things done. So, I told her my frustrations and broke down to her and the doctor that never called me back on Saturday. They understood my frustrations and said they were going to try and get a care conference scheduled this week instead of the next. The only reason we are still in the hospital is because of the breathing issues and so once it gets taken care of we are free to go home--so it looks as though we may have to get the trach afterall. I am concerned though since there is not much nursing care available in Midland so I have lots of questions for the doctors. I was also able to hold Autumn for an hour and a half yesterday--it had been almost 3 weeks since I held her last and she was awake for the first time while I was holding her. They said I should be allowed to hold her during the day if I want just in case the vent tube comes out there are more people of staff. It is such an ordeal though getting her from her bed to my arms. She is still having a few desats and not wanting to breathe much over the vent but the nurse practioner that I really like said they will continue to monitor her blood gases and maybe try to move her back to auto again soon. She was also frustrated that Autumn had to go back to regular mode while she was off on Saturday. I did find out the shunt is working and that there is no infection so that is great news. We just need to figure out the best care solution for her so we can make steps towards getting home.