I just wanted to post one last time about our experience at MUSC, which I must say, was awesome considering the circumstances! The nurses and doctors were amazing, and I don't think we could have received better care!
So, I am going to start with Thursday, when we went into the hospital. We had to be there at 5:30am, so Brian was tired and not happy to be awake, but was a joy as always ;) It was probably the hardest part of the whole surgical experience when we had to give Brian over to the nurses to take him back to surgery. Brian was excited of course to go see new people (he loves EVERYONE!) but it is very hard knowing that you are putting your baby's life in someone else's hands. The surgery took about 4.5 hours and while he was in surgery Bruce and I waited in the PCICU (Pediatric Cardiac Intensive Care Unit) waiting room. Our pastor, Mike Fitze, came and spent some time with us, prayed with us, and kept our mind off things for a little while, and my cousin Mary came to sit with us for a little while too. We were kept up to speed via a pager - our surgeon's Nurse Practitioner sent us an update every hour so we knew how Brian was doing. About 12:30pm we finally got to see Brian in the PCICU, and although he was intubated and hooked up to LOTS of IVs, the nurses said he was doing very well, looked great, and they actually started to wean him off the respirator about 3pm that afternoon! We spent the afternoon and evening at Brian's bedside, and about 9:30pm that night they took out the breathing tube! They had told us it would be Friday before he could be off probably, so it was a nice surprise ;) We couldn't spend the night in the ICU so Bruce stayed late and I went home and slept, then Friday morning I went to the hospital early and Bruce slept in at home.
When I came on Friday, Brian was sleeping with no more tubes on his face, just some oxygen in his nose. He looked so much more like my sweet baby, I was really relieved! He only woke up Friday morning a few times, and just cried every time he woke up. It was so sad to just watch him cry, but I got to feed him several bottles which made him feel better and having me near him seemed to help too. By Friday afternoon though, he was doing much better so they decided to move him to the step-down unit in the Children's Hospital (the ICU is located in the Main Hospital). I think Friday afternoon was the single worst time we had during the entire time at MUSC. Brian had a really hard time moving, I think that he was hurting and scared and just really waking up. He just cried and clawed at me to hold him. I cried a lot, but I did finally get to hold him since they had gotten some of his lines out! When I held him he calmed right down and went to sleep, but I still couldn't nurse him because he just seemed to be in too much pain when I turned him to nurse, so we gave him bottles and I held him. He was SO scared of everyone who came in on Friday, the poor baby was just terrified of everyone and everything. Needless to say, it was a long day, but once he was in his own room Bruce and I could stay the night - so we settled in for the night, and actually got 3 or 4 hours of sleep.
Saturday (VERY early morning) Brian woke up and was smiling at me! It was such a relief, because even though I knew he was still hurting, he was much more like himself. My family came in late Friday night, so Saturday they came to the hospital and took turns coming in to visit with Brian. They also brought Abby to see Brian, and she was so glad to see him. She really missed him when he was at the hospital! The Children's Hospital has a really cool playroom so Abby played and Saturday afternoon we got to put Brian in a wagon and take him to the playroom too! He was glad to get out of the bed, but it wore him out and he was in a lot of pain, so we didn't stay long and he went back to his bed and took a nap after Abby left. He was having an easier time getting on his side though, so I was able to start nursing him again :)
Sunday Brian was feeling even better, almost back to himself. That morning the doctor said she thought Brian would be able to come home, so I started packing up and even sent some things home with Mom at lunchtime, but then the surgeon came in and said his chest tube was still draining too much, so they wanted to leave it in another day. So, we stayed another night :( I was upset because I wanted to go home, but relieved too, because I was a little worried about taking my baby home 3 days after open heart surgery! Sunday afternoon and night though he was feeling so much better, we were back to almost a normal sleep schedule.
Monday morning we got up and the doctor's did their rounds early. They said they were definitely going to pull his chest tube that morning and send him home! BUT, of course it took all day ;) They had to pull his chest tube, then do an x-ray and echo to make sure everything looked good before sending us home. We did get home just before Abby woke up from her nap, which I was glad about - she was so ready for us all to be home!!
Brian is doing great, we have to be careful with how we pick him up so we don't hurt him, but mostly he limits himself. When something hurts, he just doesn't do it! If only I could get him to sleep through the night we would be just about perfect :)
