The week after we got home, we found out that Tyler has another effusion under his right lung and his lungs are damp. It is small enough that we are monitoring it closely here at home. We have also increased his diuretic medications and started giving them around the clock instead of just during the day. Each week, I take him in for an Xray and we also get a home visit from our nurse. Tyler is being watched very closely. He was breathing really hard for about a week. At one point in the middle of the night, his entire chest was caving in, so we went to the emergency room after a spot dose of diuretic didn't appear to help. It ended up helping after we got there though and we were able to go home after a blood draw and xray. It is scary going to sleep and not being able to watch his breathing sometimes when he is breathing harder. This combined with the 3 hour feeding schedule with a very slow feeding pump makes for very little sleep.
The feeding pump is getting easier. After the first week, I figured out how to load it without getting malfunctions every time I went to feed him. It still takes over a half and hour to feed him, but we started out at 50 minutes, so I will take that as an improvement. We are still unsuccessfully offering bottles. First steps will be able to evaluate his feedings next week and hopefully we can get on their therapy schedule soon.
