Day 6 - Tuesday

I feel like we're at a little bit of a standstill with Sofia's recovery. She still has her oxygen, chest tubes, and still has fluid around her lungs. She's still tired a lot and in pain at times. I think the pain is related to the chest tubes and the incision, not so much the gastro pains she was having. She really perked up last night, which was nice. We were able to wash her hair and put her in real PJs. She seemed to be in much better spirits than she was during the day yesterday. Her chest tubes are draining less fluid, which is a good thing. Really hoping she gets them out soon, but trying not to rush things. A Fontan surgery can be either fenestrated or nonfenestrated. If you have a fenestrated Fontan, the surgeon puts an intentional hole in the Fontan circuit, which is kind of a top off if pressures were to get high. The benefits are that the recovery is a bit faster. The downfall is that doctors often need to go in later, usually through a heart cath, to close the hold. And another downfall is that often the child is still blue (cyanotic). In the nonfenestrated version, there is no hole (so she is pink, not blue anymore) and as a result fluid can be a problem post-operatively. Sofia has a nonfenestrated Fontan, so the fluid that we're seeing is not unusual. Dr. Edwards, her cardiologist, stopped by as he has been doing almost daily. It was nice to have a chat about things. He is not the cardiologist on the floor this week, but he often stops in to see how Sofia is doing.

We learned something interested about the M-40 floor today. In a month's time, the whole "pod" area (I need to post pictures of the pod for those of you who have never seen it) is changing. They are expanding the in-house pharmacy and this whole area will become part of it. As a result, they will be losing patient beds and the only beds on the floor will be the ones that actually have doors. And apparently, this floor will also only be for peds cardiac patients. She has two noisy baby neighbors at the moment, so the thought of doors sounds very appealing. We have heard that if something opens up in one of those rooms, she'll be moved. I'm not holding my breath for that to happen though. We just have to suck it up and hope that our stay won't be too much longer.

Sofia played a little bit in the play room tonight, which was nice. I'm not sure how she's going to do when Oliver goes home tonight and I stay. She is really used to her daddy being her with her all of the time.

When she woke up from her nap today I asked her if she slept well and what she dreamed about and she said "Oma's sandbox." She had tears in her eyes and I felt so sorry for her that she can't enjoy things at home right now. Oliver's mom just bought Sofia a sandbox and it will be set up for her when she comes home. She also got some cute finger puppets as a gift from Oma and we were playing with them yesterday. I was pretending I was the nurse finger puppet and she said, "Maybe we can ask this nurse if I can go home." Soon, baby, soon! I forgot my camera today, but will post more pictures soon.