The Road to Recovery
In the days following Nolan’s Norwood Procedure, we fell into a good routine: go see Nolan, come home, go back to see Nolan, come home for the night. The reason for all the travels was because a declared flu season left us in a tight spot
The hospital had a rule that in a declared flu season, no one under a certain age (16, if I recall) could visit, in an effort to keep everyone flu-free. This was a problem for us because we had a 2 year old and Nolan’s newborn twin at home. We did as well as we could, getting people to watch the kids so we could go spend time with Nolan, or Bekah and I would trade off during the day. Honestly, it was exhausting. Plus it didn’t help that Grant wasn’t doing the sleeping thing just yet. So there was a lot of getting up during the night with him and THEN running around back and forth. And even when I did sleep, I didn’t sleep well because I found that fairly often I would have really bad dreams about Nolan laying there in his condition or – God forbid – something bad happening to him. Over time, thank God, those went away.
Our first days post-Norwood were pretty nerve-wracking and somehow fascinating at the same time. Nolan had two nurses, and he was their only patient. That’s an important thing: he was pretty much their world for their whole shift, and it was good to know there was always a close eye on him. Anyway, I say it was fascinating because these two nurses were working non-stop…I mean NON-STOP. One would be checking the med pumps while the other drew meds and administered them, then the other would draw other meds. It was amazing, they knew EXACTLY what to do, they didn’t go off any set of instructions, they just did it. And they were constantly moving, never bumping into each other…it was like a kind of dance. And still, in the midst of this, they would always take the time to give us updates, and answer all the questions like “What med is that? What does it do? What’s that bubbling sound?” We got to meet some Nurse Practitioners and other cardiologists, and every morning and evening that team would go room to room for rounds to discuss patients. They would always take the time to give us an update and ask if we had any questions. It meant a lot to be part of the process.
Meanwhile, Nolan was still pretty swollen and his chest was still open. As the days wore on, I got more used to his chest and it became a lot less creepy. I would gently rub his foot and talk to him, even though he was pretty heavily sedated. There was even room for smiles here and there: one day we came in to see Nolan and one of the nurses used a piece of paper towel and cut it and decorated it to look like a little tuxedo shirt and bow tie, and just laid it on his chest. It was a nice way to cover things up and it was very cute and put a big smile on my face. It was just the beginning of the nice things the staff at Levine Children’s Hospital would do for us.
We also waited…a lot. Nolan’s swelling had to go down before they would attempt closing his chest, so we continued to wait. I would talk to him, just watch him, and pray for him so much.
Posted on November 8, 2013, in CVICU and tagged cardiology, CHD, congenital heart defect, CVICU, heart baby, heart surgery, HLHS, hypoplastic left heart syndrome, Norwood Procedure. Bookmark the permalink. Leave a comment.