Well Noah is Officially a status 7 on the list. This just means he is in-active for now. Since the news on Monday that this could be a possibility I have had a mixed bag of emotions. Happy, worried, confused, anxious etc. I had a ton of questions and not a lot of answers. When UCLA called on Wednesday and asked if we could meet with the transplant team on Thursday I felt relief. I was so happy that I would not have to wait a long time to get the answers. I needed to feel good about this decision and was praying I would feel at peace once we got our questions answered.
We had a wonderful visit with the team. Dr. Alejos who is Noah's transplant cardiologist is the nicest man. He is so great at explaining hard things, and not making you feel like your questions are silly. Believe me we have had plenty of doctors who are not great at these two things and it can be very frustrating. I love the way he interacts with noah and encourages him to ask questions as well. Dr. Alejos explained to us that they have seen great improvement in Noah's heart pressures over the last two years. The medications have been very effective and Noah's pressures are in the normal range. At this point if he accepted a new heart it would not be any more beneficial to him. Noah still has Restrictive cardiomyopathy. He will eventually need a new heart. His heart still does not relax properly and this will eventually lead to heart failure and stroke. The benefit to taking him off the list right now is to buy this sweet boy some more time. Transplant is great because it will save his life however only for a short time and transplant comes with lots of dangers and complications. The longer he can wait the better it will be for him. We do not know however how much time this will buy him. He could start to show signs of heart failure tomorrow and need to be re listed or it could be another year or so. He will be closely monitored by the transplant team.
Thank you for your continued prayers and support.