Then it was off to see Nancy. He loves his Nancy from Occupational Therapy. As usual, she played with him for a while. They had a lot of fun together. When we get over the infection, she is going to start working with him again on oral skills. More aggressive oral skills. We cannot let him get lazy from the NG tube which is apparently a common thing. So today we worked on Sensory skills and ended with a few oral. One last thing to report, Nancy is going to let him start swimming again in the pool every other week and I know that Carson will love that.
Then it was off to Special Care clinic. They were holding the monthly spinal bifia clinic and there were 18 kids scheduled. When I walked into this large waiting area, it was packed. Nancy came and got Carson again and took him to play for a while. After waiting for over an hour, we were finally called back. They did his weight first thing and he is down from 11.8 to 11.5. So of course there was some concern. After going through his long history of what has happened in just the last 2 weeks, Dr R decided that we were going to back down to 5 feeds again. She thought that maybe by him having increased feeds with more fluid that Carson wasn't absorbing it fast enough and just peeing it out instead. So the good news, I only have to get up once a night for that!! Her next step was she got on the phone and guess what??? Cardiologist seems to have a new patient opening for Carson next week!!!! Dr R is the best!! She pulled her strings and got us in next week instead of waiting until Feb 9th. Boy do I love her for that. Then we also have an appointment scheduled for Feb 24th with Pulmonary and she is working with Dr E's office to move it up as well. She wants to figure some things out before she gets to aggressive with Carson. If it happens to be a pulmonary or cardiac thing, she says we would need to work on his feeds differently. She doesn't want to mask a more serious problem with her treatment plan. So as far as the NG goes, we are going to handle that differently as well. But it will stay in place for now.
So as far as next week, we have 4 appointments for sure, and she is hoping Pulmonary works Carson in next week as well. So we may end up with 5 appointments.
Dr Tarvin's office just called and as of 11:52 AM, they confirmed that he does have staph on his chin. They told me to keep him on the Bactrim (SP?) until I hear from them tomorrow. This is something I didn't know, they put different antibiotics around the peatree dish and will see what medicine works best. So we may stay on what we have, or they may switch him tomorrow morning. She will also be able to tell me how bad the infection is and because it is in his head, it can end up being more serious because it can get into the blood stream and go to the brain. Can we catch a break here people???
And to make matters worse, I have finally picked up a really bad cold. So after everything yesterday, I came home and waited 45 minutes for Coltan and Cody to get off the bus to help me take care of Carson. Coltan was such a doll, he ended up putting two blankets on me because I can't stay warm. I'm hoping that this will pass quickly and that Carson (or Coltan and Cody for that matter) don't catch it.
Here are a few pictures from yesterday. This is Carson at 8:30AM pretending he is liking mornings.....that is what he gets for not going to sleep until 2:00AM. I gave him some fruit loops and apple juice and he ate his usual 5 bites and was done. Now we are having some fun. Look, I can see your belly button.
He was wanting to pose for me so I could see how cute he is.
This was on the tire swing. Look at his hair in the wind.