Thursday, January 19, 2017
Prayer for Noah
I wanted to remind you all that Noah has his Heart Cath coming up this Monday at 9:00a.m. For those of you who are new to our blog. Cardiac catheterization (cardiac cath or heart cath) is a procedure to examine how well your heart is working. A thin, hollow tube called a catheter is inserted into a large blood vessel that leads to your heart. They put Noah to sleep and they go in and are specifically looking at his heart pressures. They do this procedure every six months. Five years ago his pressures were a little below the normal range and he was put on the Heart Transplant List as a status two. We held our breathe every time the phone would ring. A few years ago his numbers were in the low normal range and doing much better. They stayed this way for the next year and a half so the team moved him to status 7 on the list. This means he is still occurring time but is not accepting a heart. We are so thankful for how well Noah's heart is doing but we also never forget how fast his pressures could change and how big the possibility is of him going into cardiac arrest. He still has a scary EKG that has been unchanged since he was 9. It basically shows that he is in major heart failure. The doctors are very puzzled by this and monitor him closely. On Monday if his pressures are still good they will move this heart cath to every year. This would be amazing! If they are not good he will need to become active again on the transplant list. It's a procedure that none of us look forward to so will you please pray with us for good results. Now that Noah is older it gets even harder. He is processing all of this right along side of us. He understands it all and its a lot for a teenager. Noah also needs to have surgery on his other foot. Last year we were told that Noah has Tarsal Coalition in both of his ankles. Most likely a symptom of MD. This was causing Noah pain in both feet. Since they do not do them both at the same time, we had them do the foot that was causing the most pain. This was a bigger surgery with a harder recovery than we had expected. We wanted to hold off on doing his other foot for as long as we could but it is starting to cause him a lot of pain. Please pray for wisdom for us as we try to decide the best time for this surgery. He is slowly showing more and more signs and symptoms of this Desmin Muscular Dystrophy that we both share. I can't even explain to you how incredibly hard it has been for myself to walk through this and experience loss after loss but to watch your son struggle is 1000 times worse. Even though I'm confident that the Lord is going to use him in powerful ways my heart hurts. When he asks me if he might need a wheelchair one day I feel a sucker punch to the gut. When he tells me it hurt to breathe at youth group, or his legs hurt from running, or I watch him struggle to play a game of football, open a jar, see his lack of muscle tone. It all wrecks me. Pray for Noah. Pray that he would cling to the promises of God. That he would trust in his goodness and truly believe that he has good for him. Pray for Jason and I as well that we would believe the same. Thank you for those that have carried us through these years and continue to pray for our family and thank you to those that are just discovering our story. We are so blessed by you all.