Recovery

I let Marc be the one to take him back to be put under since I'd been able to be with him when that happened for his MRI and his MIBG scan. I don't even know how we managed to keep Conor asleep while Marc got suited up to go back with him!

Just like with his heart surgery Conor was a total rock star when it came to recovery. The doctors had said 4-7 days in hospital for observation after his surgery, but he was doing awesome and all ready to go home after just three days.

He had one night in the PICU. They take such good care of him there. He was still on morphine and ibuprofen for pain while he was in there. He just has gotten the most amazing nurses and nurse practitioners every time. We were bummed it was looking like we were going to have to cancel his appointment with genetics. His surgery was the 8th and his appointment was scheduled for the 12th. We'd been waiting to meet with genetics since May, so I was pretty disappointed it looked like we would have to cancel. Marc called them while he was in surgery to see if there was any way to make it work while he was in the hospital, but they shut him down pretty fast and rescheduled him for the end of January. Luckily, once we got back to the PICU, the NP heard us talking about it and said she would see what she could do. She called up genetics and within an hour they had some doctors over to see him and tell the nurses what kind of blood samples they wanted. We were so glad they were able to come see him while he was in there, because they ended up wanting 5 or 6 vials of blood and were able to use the iv lines that were already in place instead of having to stick him again. He is a really hard stick when it comes to blood draws, so anytime we can avoid it we are happy. Genetics asked us about a  million questions about both Marc and my medical and familial history and then gave Conor as thorough of a look over as they could with all his wires and lines. Their tests take quite a while to come back, though, so we still don't have any conclusive answers from them.

After one night in the PICU Conor got moved up to the Oncology ward. I don't know why, but I was completely unprepared for that. Obviously that's where they would send a baby that had neuroblastoma, but for some reason I was still expecting them to send him up to the regular baby and toddler floor where we've been before. His nurses in oncology were amazing, as well, they were so helpful and loving and just awesome. Of all the things Johns Hopkins does well, hiring excellent nurses is definitely one of them.

Poor lamb, he was so done with all the vitals checks. It felt like SO many different people kept coming in to check on him. Surgery, oncology, genetics stopped by again, then there was just the general pediatrics doctors, poor lad couldn't catch a break. At least most of the time they were able to check him while I held him, instead of having to be in his little hospital crib.

Seriously. Done. 

He spent the next two days being monitored and slowly weaning from morphine to oxycodone for his pain. I was super grateful that he was cleared to come home so quickly because co-sleeping babies and hospital beds do NOT mix well. Marc brought Gigi and all the kids up to see him on Saturday morning and we ended up all being able to go home together a few hours later.

Happy to be home with his family!

He continued to recover so well at home. The surgery was laparoscopic, so he had four little cuts on his belly and they made a cut through his belly button as well. So far his scars are looking good, though his belly button is an outie now, after having that surgical camera sent up that way. He continued to take oxycodone and ibuprofen for a few days after we got home. And it took him a good week after surgery to be willing to give us kisses again, poor lamb. I guess he was holding us accountable for all the pain and uncertainty that he had to deal with.

New outie belly button. You can see he still has tape on one of his incisions in this picture

While we were in the PICU his oncologist stopped by and told us that they were anticipating that he would not need chemotherapy at all, but that we would wait to hear the pathology report from his tumor before saying that 100 percent. We waited and waited and of course I missed the phone call when it finally came! But she left a message saying it was "all good news" and we were able to talk to her the next day and find out that chemotherapy was officially not in Conor's plan of care going forward. I can't even describe how relieved we are that Conor doesn't have to deal with that. I can't even imagine how horrible that would be for my little guy.

We are feeling so blessed that his prognosis has been so great. Just like with his heart, he ended up with the best case scenario for a pretty crummy diagnosis. His oncologist said they call tumors like his "rare-omas" because it is so super rare for them to catch them so early. Lucky, blessed, baby boy, we love him so much.