Day 3 on the Pediatric Floor

When I posted last, it was in the afternoon on August 5, last Wednesday, and I explained how we were expecting to be transferred to the pediatric floor possibly by this weekend. Well, I got home at 5:00 that day and we all went out to eat, and at dinner, I got a call from the hospital telling me they were moving him right then! So we still had to go home, get Mark in bed, and pack a bag before I could make it back to the hospital. I arrived around 11:30 and stayed the night.

Although it is a very good thing Brett does not need intensive care anymore, it is a lot more difficult on us because someone needs to be here with Brett all the time. It is not required by the hospital of course, but with a private room and sharing a nurse with several other children, we are determined that he not be left alone for more than 30 minutes or so. Thankfully, they are making a special case for Gantt to be able to stay overnight. Siblings are not usually allowed. Also, Brett's room is right at the nurses' station, so if we leave to go to the cafeteria or whatever, we just tell them to please listen out for him since we will be gone.  We have many more "liberties" on the floor than in the NICU, as I also explained earlier. It is so nice for Gantt to have his pack and play to sleep in. 

Overall, we are getting settled in fairly well, although still "learning the ropes" as things are very different here. Brett is sleeping better in a quiet, darkened space, and he is able to do a lot more interacting. As hard as it is to sleep here every night, it is nice to not have to leave him, either. The CF doctors and nutritionists are working with his feeding protocol to help him gain weight. I talked with a friend today and was able to explain a lot about what it is that Brett's disease does to his body. If you would like to read a little more information about CF, go to this website for the most accurate and most recent information.

cff.org