CV-ICU Days 6 & 7, March 26-27, 2017

The last two days have felt a little like the movie, "Groundhog Day", where each day you wake up and repeat the prior day's events with a few minor twists until finally at the end, you get it just right and snap out of it and get back to reality. 

Sunday, March 26:  The day started out with the morning echo, which showed the LV is stable -- not better, but not worse. Nicholas was able to get out of bed and move around his room a little and in the afternoon he took his first walk from one side of the CV-ICU to the other side, where he became the roommate of another older boy. 

Prior to moving to the other side of the unit, Nick was in great spirits. He was playing the X-Box, racing cars and really starting to feel more like himself. Then the walk and room switch. The nurse said the older boy wanted to play the X-box and this totally dampened Nick's mood. He became very sullen and teary. The older boy coughs makes a lot of uncomfortable sounds and made Nicholas very uneasy. Thankfully that night, Nick slept hard, only waking up once to go to the bathroom and he got enough rest to give him the energy he needs to continue on the path to getting out of here.

Monday, March 27: Again, a morning echo. We didn't hear the results from the echo until late afternoon, which was that the LV is still performing at the same level as it has been for the past week. Nicholas took 2 1/2 laps around the unit, and he got to look at the flowering trees outside through the window. It was nice for him to see sunlight and get out of bed.  

Lorenzo and I met with two child psychiatrists in the afternoon to talk about how Nick is processing everything that he has gone through with his prior surgeries, this surgery, and the likely upcoming Double Switch surgery. Nicholas doesn't hardly ever complain and he seems to internalize most of his feelings. We worry that he is probably harboring emotions that he doesn't understand and that getting some of his feelings out to someone will help empower him now and in the future. We gave them a family history and told them how he only randomly ever talks about his heart, but the questions he asks are very deep and evident that he is thinking about his health and heart more than he verbalizes. There was not enough time for them to spend with Nicholas so they said they would be back tomorrow (which is now today) to talk with him. With that being said, yesterday when we got back to his room, he told me he did not want to talk to them. I asked why, and he said it's because he cries easily and gets very emotional. I told him that is okay, and that we think it will be nice to talk to someone who is impartial and can help him work through some things.

Nicholas finally got his "IJ" (intra-jugular) IV pulled from his neck and his "Art line" from his wrist. The art line required a splint-like contraption to keep it still and stable. Once that came out he was able to hold a pencil so he can start working on schoolwork and try to catch up on some of the material his teacher sent home with him. The only things left are the IV in his left wrist and his pacer wires in his belly.