Save a Broken Heart

I have not posted an update in awhile; things have been absolutely crazy since we have been back home.

We are gone three days a week for dialysis. I did not anticipate how much time it takes to get back and forth to the city. They have increased Aarons dialysis runs to 4 hours each treatment, and it takes about a half hour or so to set him up on machine. Therefore, we are in treatment and he is doing fantastic being home. I have not seen him happier.

Just a little background info for those who are just finding Aarons story….

We are still waiting for the phone call, he is still listed 1A. I can’t tell you how many people – even nurses will ask me if we have the organs or when the transplant will take place. I have answered that question so many times.

So no, we don’t know when it will be. It will be a 5-hour warning or so because he needs a heart. In order to receive a heart, it has to come from someone — a child close to Aaron’s size, with the same blood type and match that would be on life support. He also has to receive the kidney from same donor, so he does not reject it after the transplant.

We are just waiting and waiting. Because of his age, it could be a long wait or it could happen at any moment. We have waited 6-months so far. Children in his age group tend to wait the longest. That is why we are trying to raise donor awareness, children like Aaron die each day around the world waiting on a list.

He is on an IV medication that he has to have running continuously. The medication gives his heart a little extra squeeze because he has a very very faint light squeeze in his heart, while the rest of us have these vigorous hardworking pumping hearts beating in our chests that is what has happened that is why he is in kidney failure his heart could not pump or work to keep his kidneys functioning.

Now since kidney failure Aaron does not urinate at all (we get that question a lot too) that is why he goes to dialysis to filter his blood of all the toxins. Our little tiny guy is in a battle inside that little body of his night and day every breath is hard and each pumping of his heart is very faint. He is a miracle to us and we will do whatever we can to get to his transplant we have to ask for your prayers.

Remember the movie Horton Hears a Who? I think of it often God will here all of our voices praying and Aaron’s miracle will come (WE ARE HERE, WE ARE HERE) I scream it in my head constantly because our faith will keep him strong. I can’t give up, but I am asking all of you to not give up. I am so extremely thankful to each and everyone of you for your constant prayers. In Gods time.

I am home, Aaron is home now, and we could not be happier! My boys needed to be together it was so difficult and hard on them so keep them in your prayers too. Everyone says children are resilient and so on and they bounce right back but put your children in our situation. They are all just children. They should be having fun and laughing and playing and learning, but its like they are growing up in the middle of a war.

Thank you all for not giving up, we try the best we can each day and like you, I want the best and brightest for my child. I wake up each day and thank our God for every Moment.