Today was our long awaited appointment with the transplant team at UCLA. We started the morning off meeting with six people from the transplant team. We talked for three hours and went over a ton of information. We then grabbed a quick bite to eat, got some labs done, took a tour of the PICU floor, game room and private rooms, and ended our time talking with one of the transplant surgeons. It was a long day but very helpful. Everyone was so wonderful, made us feel great and we walked away just feeling so grateful to finally get to this wonderful place. We learned a lot and feel more at peace as much as one can feel in this situation. They are going to list him right away probably in the next 30 days. We had been told previous that Noah's pressures were high and we really had no idea what that meant. We did learn today that the normal pressures in a person are 4 and his number is 14 and continuing to increase. Just to give you an idea the surgeon said he sees patients at complete heart failure and there numbers are between 25-40 so his are high and we do not want him to get to the critical point. The team's main goal is to get a heart NOW while he is able to be at home before Noah goes into complete heart failure. We think that sounds like a GREAT goal. We will be in contact weekly with the team and once we are listed we have to stay close by. They are still estimating 6-9 months but it is very dependent on a lot of factors still. Another positive thing today is that he gave Noah permission to go back to regular activity. No competitive sports but he can run and play like a normal kid. The reason for this is because they need to gage his response. He has been on no activity since January so they can't tell if he has slowed down. They want to see how tired he gets and how out of breath he is. Great for him scary for mom and dad :). He tested this out when he got home tonight and he did one lap and ran up the stairs and his breathing was very labored. I was very surprised by this and it made me a little sad. Up until now he hasn't really shown any signs that he has a sick heart.
Please continue to pray that God would protect Noah until he gets his new heart or that he would completely heal him and take it all away(we do have a big God who is capable of this) Pray that he would be able to process all this information and ask us all his questions.
Pray that God would use this situation for his glory
Thank you once again for all your love and support, we are beyond grateful for you all.