Yesterdays appointment gave us a plan. It is certainly not a plan that we would have ever chosen for our child, but it is the plan that God is choosing to reveal his Glory and so we trust in this plan. Based on the number pressures from Noah's Cath test he needs to be put on the heart transplant list right away. He does not need a pacemaker or defibrillator but needs a new heart. We asked what the typical wait was after you are put on the list and we were told he would wait 6-9 months. This was a lot to take in. We thought we had years before this would happen. It will take about 30-45 days to get everything in order to present to the heart transplant board. He will need lab work to determine blood type, tissue work up, meetings with the team, social workers etc. He will need to be on certain medications to prepare his lungs and organs to accept this new heart and much much more. This visit they answered some of our questions but we will meet with the whole team to go over more in detail and will give us a huge notebook that will go over every detail and question we can think of. He is now on the same medication as Hannah that will help his blood flow and help with the pains he is currently experiencing. We are still awaiting news for the transfer to UCLA. Please PRAY this will go through. The doctors are going to do all that they can to help us out but we really need this transfer ASAP.
We had a good talk with Noah after the appointment and explained that he would need a new heart. His sweet response was "Will I need to ask Jesus into my new heart?" I love how concerned he was about making sure Jesus remained in his heart. This kid blows me away sometimes. Daddy explained that it was a metaphor and that Jesus would always be with him but he could ask him again and again to come into his heart. He asked if he would be a different kid and when he could run but thankfully not where the heart was coming from. That will be a hard question for us to answer and will be praying that God would help us get through that conversation. We then had to tell him the news that broke his heart. We had to tell him that we had to miss our family vacation to Hume and wagon train camp. He broke down and sobbed and sobbed. He has been looking forward to going to camp for over a year now. The doctor said we had to stay at sea level because it would be too much on him and we need to be really close to a hospital. We told him we would plan something fun to do in place and that he could help us plan it. Over all he is handling everything better than we could have ever imagined. This is going to be a long road that is only just beginning. We want his heart to remain focused on the Lord and his eyes to be opened to see how God is using him in this storm.
He brings beauty out of ashes and his mercies are new every morning. We pray he will use this to strengthen your faith as you pray and walk along side us.
"Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, 'He is my refuge and my fortress, my God, in whom I trust.'" Psalm 91:1-2