Post Op Day 5

Dr Boaz came to see us and let us know that his brain MRI showed very turbulent blood flow but that is because he made such a big space for his brain to grow into. Not a bad thing at all but it was just a finding on the MRI and wanted to explain it to me.

He said that he didn't see anything on the MRI that would contribute to Brocs choking episodes. He does recommend that he have his laryngeal cleft fixed next year sometime. We will probably schedule it after his recovery from his leg procedure or towards the end of it.

His CBC looked good. His platelets had come up. His WBC had also come down. What was concerning is that his eos count has started to climb. I pretty much knew that was going to happen as Broc was still running temps. His immunologist was contacted and it was decided to start Broc on a course of steroids for 3 days to knock the eos count down again. We will re test his CBC on Sat to see where his numbers are again. Depending on what they are we will re test again 3 days later. If his eos number is trending up again we will do steroids again to knock the inflammatory process down again.

The rest of the day went fairly well. Broc did nap again. We discontinued the morphine to see if he would tolerate his pain without it. He did really well with that. We then started loratab and kept the IV toradol. We could also use valium as needed too.

That night Broc had a terrifying episode where he started shaking, his lips turned blue and his heart rate when crazy high. The episode lasted about 10-15 minutes. The blue lips were only about a minute or so. The nurse came in to check him over.As soon as the episode finished he was exhausted and begging to sleep. It was as if his body was totally wiped out from it. The rest of his vital signs were stable only his HR was still a little high at this point. She went to page the team and they are also consulted with cardiology.They said that if everything was and his vitals were stable then they would just watch to see if it happened again. Needless to say I never went to sleep that night.I called Mark and we talked at length about it. While I was on the phone with him Brocs HR started dropping into the 50s while he was sleeping. That was very scary for us so we had the team paged again and a Dr came over to watch the monitor for a while and look him over. He listened to him and said that everything looked okay, but they would consult with cardiology in the morning.

I never got much sleep that night as it was close to 12:30 when a team Dr came in to look at him. I only got a little sleep as I woke up every time he moved.