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.
Posted: Monday, April 19th, 2010
Tags: Aaron Tanner, organ transplant, prayer
Hi Elizabeth!
I don’t know why I never thought to ask you this question before… but it’s just one of the many things that one does every day out of habit not even thinking why! Well, until I knocked a cup over last night!
What the heck am I talking about, right? I have been saving the pull tabs from aluminum cans. I was told a long time ago that 1 pull tab from a soda can is worth “1 free minute” of kidney dialysis. I don’t know for whom or from where. I only know that I save them (as does my friend ) and I turn them in at the Flor d Oakley Hall when I go & play bingo! They must collect them in mass amounts because they have a HUGE container full of them! And it’s labeled just as I stated above, for “free kidney dialysis.”
So here’s my question to you. Have you ever heard of this? Would benefit Aaron for some “free” kidney dialysis?
What an easy fundraiser this could be! Who doesn’t drink soda? It’s so easy to twist off the tabs! I just throw them in a dixie cup on the kitchen counter and of course then I manage knock the cup over too! Well, it needed to be emptied into a ziplock anyways. And that is what triggered the thought to ask you. Dumb me, it hadn’t ever even crossed my mind before. See what creatures of habit we are!
Let me know if you think this is something to pursue. I bet the hospital would know how to pursue this or if not to pursue it.
Still praying for all of you! I think of you all daily! Aaron’s miracle will come. God is just waiting for that PERFECT time for it all to happen! And, can Aaron get any darn cuter? You have a precious angel boy! Keep the faith and remember, we are always here for you!
Love, Susan Zahn
Hi there! My name is Jacqueline Benitez. My friend is doing a cupcake/cookie sale for Aaron this weekend and I was reading what the event was for. I am really out of the loop with things between working full-time and owning business, so this is first time I have heard of Aaron’s story. His story has really touched me and I am terribly sorry for everything that your family has and is going through. I would love you help your family and have a fundraiser at my business for Aaron. My husband and I own Yogurt Island in Oakley. Please let me know if it is something you would be interested in. I know your life is hectic so I don’t expect you to be there for the fundraiser, but if you would be willing to allow me to do one in his name to help raise money for you guys please let me know. Thank you and God Bless!