Asher had a rough night with coughing. He decided he didn’t like the cpap anymore and they ended up putting him back on the HME 2 hours after the put him back on CPAP.  He was coughing up a lot of mucus and we had a few vomiting episodes.  He was up for about 2am to almost 10am coughing.  I was finally able to get the team to acknowledge that he’s being overfed yesterday, but nutrition was still not on board with reducing volume.

Dad did his trach change today and did awesome. During rounds I was able to provide a few recipes showing calorie density of certain items and they are allowing me to cook and blend some food to bring up for Asher instead of getting the stuff they’ve been giving him in the hospital. 

I’ve been asking about case management for probably the last two weeks and she finally came by early early last week. They’re just barely starting to get things rolling as far as ordering equipment and supplies. I told them we’re leaving on Thursday so hopefully they have their stuff together pronto. We had a guy come in from the DME company telling us that we could not use their home CPAP that was ordered in Louisiana because of legal requirements. Initially, they were saying there wasn’t anybody in or around Louisiana that would be able to get us the machine so that we can discharge. Not today satan. Every time we’ve gotten close to getting out of here or something has happened. We rebuked that and prayed over that and it wasn’t but an hour later that we got a call that they found a company in Louisiana. Praise Yah, because honestly that would’ve pushed me to the point of just leaving AMA and having to deal with CPS all over again. ABBA is making ways.