Are we having fun yet?

Yesterday was a long and emotional day. Bobby was up and about, but he just didn't seem "right" to me. His heartrate was elevated and once we hit the afternoon he just stopped drinking. I thought that maybe it was the old chest tube site, that maybe the antibiotic wasn't strong enough. But his total count for drainage was 185cc, so we went up for the day and now I wonder if that extra fluid was the problem. Due to monthly and weekly changes of doctors, we are on a new set now, which is frustrating as well. We used to have Bobby's primary cardiologist in charge and she is such a wonderful advocate for him, plus she knows him. I was also concerned because his weight went from 13.8 to 14.1, which means he is retaining fluid around his body again. My biggest problem is that I get so emotional and can't keep my composure! Then I get angry that I am not being patient when there are so many others around here who have been here longer and are going through even worse times.

On a positive note, Bobby had music therapy and a visit from a guitar player later in the afternoon who sang songs with the kids. This is the same guitarist who played in the CICU when Bobby was firstborn. Bobby loved it! We are also at the start of a fresh new day. We have to stay positivie that we will move forward and remember that this is all in God's timing. We don't want to take Bobby home if he is not ready and maybe there are some families around here that we need to help before we can leave.

Again, your prayers and thoughts are always appreciated! (Especially for our heart friends).

Rachael