I want to start off by saying thank you so much for the overwhelming response to my last post. You all have been so encouraging to us. It feels great to know we are not walking this road alone.
The day after I posted my last post we finally were able to get an appointment at the UCI MD clinic in Orange. I have to say it was worth the wait and all the frustration. They got us in the next day. We met with a wonderful Neurologist who we could tell took the time to review my file. She encouraged me that I would be well taken care of. At the UCI MD clinic they take a team approach. Meaning each time I'm seen at clinic I will see a team of doctors. Pulmonologist, cardiologist, physical therapist and like six others. We were THRILLED at this. I go back on this Tuesday to meet the whole team and discuss a plan of action. I have already been told that the biggest concerns are my respiratory muscles and heart so they will be monitoring those more closely. We are so thankful for God's answered prayer in bringing us to this place. Someone asked me if I was frustrated that we didn't choose them over UCLA. Honestly it was hard to wait to get to this point but I started thinking about the many doctors I have seen and that now have exposure to this rare disease. Hopefully they will be able to help other people suffering from this same disease because of their exposure and experience with me. I look forward to updating you as we learn more about the future plan.
Today was Noah's appointment at UCLA. We haven't seen the team since his last heart Cath procedure in September. We were shown pictures of Noah's heart and his pressures and were amazed at how well he is doing. After talking with the team we feel that it is best to make Noah inactive on the list and reevaluate his progress in July at his next heart cath. Their is risk to this but we feel there are risks both ways and we feel at peace with this decision. On the list or off the list we ultimately know who is in charge :) So how does this work? When a person goes on the list they are given a status. If you are waiting in hospital you are given a status 1A and are priority. If you are waiting at home on IV meds you are given a status 1B second priority, if you are able to wait at home on meds you
are a status 2, and if you decide to go inactive for awhile you are status 7A. Noah is currently at status 2 but will now go to status 7A. He will not lose any of his time on the list and can go back to active at any time. Jason and I feel at peace. The last four months have been hard for us. We have been worried about getting a call and having to accept a heart when he is doing so well. We will feel so much better about accepting a heart when he truly needs it. Transplant is great in the fact that it saves lives but it also causes a ton of other issues and complications so the longer we can pro long it the better for our son.
Please continue to pray for Noah and for our family. We continue to trust in the one who formed Noah and has him in the palm of his hand.