A few things have happened since our last post. Casey had her follow-up chest xray last week. The doctor said it looks a little better, but still needs some work. For now he wants us to continue the course. We are doing lots of breathing treatments and she is still on BiPAP all night.
Last Wednesday Casey started to sound a bit wheezy. By Friday she was really wheezy. We were told that she is at increased risk for pneumonia due to the collapse. In addition to the wheeze Casey was also having more secretions and they were getting pretty thick. I called her pulmonologists and we got her started on an antibiotic. I don’t think she has pneumonia, but we want to be sure if this is early signs that we stop it before it gets bad. After just 24 hours she was sounding better already. Today she is not wheezy at all. We have to finish a 10 day course.
This morning Casey had her GI follow-up appointment. I made it before our Monday-Tuesday nurse fell asleep on the job. I really wanted to keep this appointment if possible. I called a few people and lucked out. Casey’s previous nurse was off and available. She came over this morning and went with us. Casey is always happy to see her. They had a good time catching up this morning. The appointment went well too. Casey has gained a little bit of weight since discharge. She is back to 29 pounds now. We talked about her poop issues and have a few things to try. Hopefully we can get them a little less runny and less frequent soon. We go back in 4 weeks.
After we got home I had a meeting with Outreach. They are a DBA that poses as a middle man between us and Medicaid – MDCP. We can use this to hire our own nurses for our respite hours. Between previous nurses that Casey loves and a nurse we met while in the hospital there are a few nurses that we would love to stay with Casey so we can go to dinner and/or a movie every now and then. He is doing some more paperwork and will get back to me. If this goes well, we should be able to start doing this after the new year.
Tomorrow is a quiet day. I think we will just do some playing and read some stories. Then Wednesday we have ENT. Casey missed her cholesteoma cleaning while we were in the hospital. This is never fun, but we have to stay on top of this to prevent needing a surgery.
Casey is loving the Christmas lights and music. Tim wants to leave them up all year for her. If they didn’t get so dusty I would say okay 🙂 I think that is about it for now. We hope everyone has a wonderful Holiday.
