For the past nine months, we have gone to bed wondering if “tonight” would be the night. We have woken up wondering if “today” would be the day. Not one day has gone by that we have not think about it. When we were first listed, our doctor told us it would probably take 6-9 months to receive “the call” for his new heart. Because he had patients who did not even make it home from a routine clinic visit before they got the call, he said to be ready at any time To be honest, we did not expect to be waiting this long. We are hopeful that God has the perfect heart for Noah.
We are also thankful for a good report after Noah’s catheter procedure.
Monday morning Noah went in for a heart catheter procedure. This is the same test he had a year ago that helped the doctors discover he had RCM. The heart cath measures the pressures in a heart. The doctors wanted to see how much the disease had progressed this past year. We were told the normal range was 8-12. Last year Noah was at 15. This is high, but not dangerously high. This year Noah’s pressures were at 16. Still high, but not dangerous. With RCM, these numbers can drastically change at any time. Every person responds differently and it is very hard for them to know when and how fast the numbers will jump up.
His lung pressures were in the normal range, which is a huge answer to prayer, since he is on medication to help keep them there. People with RCM can develop high pressures in the lungs causing them to need a heart AND lung transplant. We are very thankful for this good news.
Noah did great before and after the procedure. He is such a brave little guy and he knows what needs to be done and just goes with it. A nurse commented on what a well-behaved, sweet boy he was. Words that comfort for this momma’s soul. Of course, this was of no surprise to me :) I think he’s pretty special.
Our sweet transplant coordinator Allison also came to visit us in recovery. She was very excited to tell us that they got a call 12 days ago that Noah was #2 for a heart. They only call you when you are #1. The staff all got excited seeing his name. The #1 received the heart which means Noah is now #1. We try not to get too excited over this. This could ALL change if people move up on the list or if new people are added and they are at a higher category than Noah. It all has to do with blood type, size, status, and antibodies.
It has been a hard road filled with waiting and worry. We are living our lives in limbo waiting for the next phase. We rejoice with these small victories and are hopeful when we get good news. We know we still have a very long journey ahead of us. We know that this new heart will not cure anything. We know that it will come with other difficult things. We also know that this is God’s plan for us. We know that He works all things together for His good. We know that He allows these tough things so that the works of God can be displayed. We know that we can put our hope in Him – the Creator and Sustainer of life.
Please pray for us as we strive to have JOY in all our circumstances.