View new video footage of four year old Aaron Tanner, who is in need of a combination heart and kidney transplant. His mom and dad, Elizabeth and Mark Tanner give an update on their story.
Posted to YouTube on December 16, 2009
Won’t you help to Save a Broken Heart?
Aaron Tanner needs your Blood!
Location: Eastside Church of Christ,
1020 East Tregallas Rd, Antioch, CA
Time: 1:30 p.m. until 7:00 p.m.
Date: Monday, November 30th, 2009
A Blood Drive is being held in honor of Aaron Tanner’s quest to find a new heart and kidney. Aaron needs to have blood available, for a successful transplant operation when the time comes. Donors with O Positive blood are encouraged to donate.
Want to find out more about donating blood please visit http://www.givelife.org/.
Contact Tim Kyle
Tim_kc6qlv@hotmail.com
(510) 377-4703
Praising God for all he is going to do lifting him up in anticipation of Aaron’s miracle.
We are asking God for strength for my Dear friend Noelle and her son. I am so torn apart by what she is going through. It does seem like things are so unfair. Noelle is such a good spirit, an Angel on earth. She would do anything, for anyone and now she has been widowed at such a young age, and suddenly with no way to prepare for this devastation.
Her husband Joel was so young and am told he was in tip top shape, the last person you could imagine that this would happen to. We have to cherish every moment with our loved ones. I was told that Noelle tried to donate Joel’s organs and designate them for Aaron.
I am asking our glorious God to surround her with friends and family to help her morn her loss. To give her the peace and strength that he so promised us at these times.
I am also asking God again to put his hands on Aaron’s heart and stop the erratic heart beats that he is having. We were moved into the ICU at 2:00 a.m.; Aaron has continued to have PVC’s and bigeminies one after another for hours on end.
Doctors thought they were due to his electrolytes and they have corrected all that and they are still occurring. They are telling us his heart is under stress and trying to compensate. The monitor alarms constantly and the nurses are coming in each time to check and we are constantly watching and asking if he feels okay.
The three of us have not had much sleep in the past few days. Aaron was awake from the move to ICU. Mark and I both are constantly jumping to see the monitor that now is more alarming to all.
They have stabilized Aaron as much as they can for now; it is truly in God’s hands. They say the erratic heart beats can stop on there own or cause a catastrophic event so it is hard to just sit back and wait.
Aaron is ready for transplant now; he will be listed the moment Dr. Lax’s (the transplant surgeon) airplane lands. I believe he returns Wednesday maybe Thursday. So he can be ready any moment after that. There is another transplant surgeon here at UCLA but Dr. Lax is the only one in the world that can do Aarons surgery.
Aaron will be listed 1A top of list that means, when an organ his size and blood type becomes available it will be offered to him. The transplant team consisting of a renal transplant doctor and heart transplant doctor will go to the hospital wherever it may be and evaluate and determine if the organs are okay for Aaron. It will all happen pretty fast once the wheels start turning.
They had talked about discharging us to wait and I do not know how that stands anymore since he is having these episodes I am praying that they correct themselves.
Thanking you for following Aaron’s story and for sharing it with so many. I am trying to keep everyone updated. We are so overwhelmed by the love from all. Please continue to keep Aaron in your prayers. I am looking forward to telling all that it is his moment and we are going into surgery. God Bless Elizabeth Tanner
Prayer warriors, we have been here two weeks. Things are on such a fast pace.
Early this afternoon (October 13, 2009) Aaron underwent his second MRI. He had one shortly before we left UCSF, but those images are not clear enough for the transplant surgeon, Dr. Lax, to map out the transplant. Aaron, also with being a hyperplasic left heart baby, has left atrial isomerism and heterotaxy and he is a single ventricle kid. His insides are all different than most congenital heart children.
For 4-years he has been walking around and he was very sick inside his medications and surgeries were helping him. We being here with Dr. Lax are the best thing that has happened to Aaron, he is one of only maybe a few that could do this transplant. He has done them before and he has done them before with success. Once Aaron has this transplant he will be more or less cured of his major heart problem and should be able to live a normal life.
Aaron will be listed in just a few days and he will be listed with status A1 that is the very top. When the doctor is off and not available to do surgery they are talking about putting Aaron on as status 7 that means he accrues time, but he will not be called if organ becomes available only because Dr. Lax is the only one of the transplant doctors that can do this. Luckily enough Dr. Lax is pretty much here 24 /7.
I think he is taking a couple days off next week, so Aaron will be status 7 for a couple days but that means they have faith that it could happen any moment once listed. All that is happening is very good they are taking such care with everything that is happening. God has put us here for a reason and put us into the hands of a very capable cardiac team. We will have Dr. Lax as his surgeon and Dr. Alejos and Dr. Greg Perens as his cardiologist team.
We will be discharged from the hospital maybe early next week can you believe it. We have been in the hospital since June, he will remain on his milrinome IV medication, and be assigned a home health care nurse that will check on us .
We will be nearby the hospital, their only fear is that he could go into tachycardia, but so far he has been stable the entire time. We are still in the process of trying to find housing we have a couple temporary situations. Nothing long term or permanent yet.
The doctors feel he would have a much better quality of life right know outside the hospital being here is so hard on him. He is only 4 so I have such a hard time rationalizing it all with him. He is also at his witts end with it all. He was in the ICU almost all of that time so he has had his vitals done every two hours and had bandages changed over and over again and now his dialysis.
The only way I think I have managed this far is with the love from all back at home and with the Love of God, when I think I cant do it anymore and I just want to take him away from all this I always pray and somehow God has been there each and every time. He shows himself in the love from so many at home and in the love and support from our family.
Aaron is scheduled to have his MRI this early afternoon and I spent most of the morning signing consents as well as listening to the doctors explain his odds and possible outcomes and hearing that regardless he had to do this. There is a small chance that since he is in kidney failure he could have a bad reaction to the dye that is used in this MRI and develop an auto immune disease.
So, being here alone I was very scarred and nervous. Before coffee or anything this morning I was given a letter from father Dismas, telling me to stay strong it was probably sent a week ago but did not arrive till this morning.
Then Aaron and I went to the playroom when we returned there was a card from father Dismas, sent on an entirely different date that arrived also fatefully today letting us know that our family at Holy Rosary is praying for a safe and sound return home.
That was not just chance — that was OUR GOD answering my prayers. These kind situations have happened on so many occasions throughout this whole ordeal. I was so sadden about being alone today and I was being told that I was not alone.
Rejoice in all you have not the things because they are just that things, rejoice in having God be with you when you need it most and even when you don’t realize it. I am suffering immensely but Our Lord over and over again will not let me suffer alone he is here with Aaron and I time and time again.
God Bless you all prayer Warriors and thank you for your continued support. We are just beginning to climb this mountain. We don’t know how long it will take but we can do it.
So, Mark left this morning. I will not let the fear of being here so far away get to me. We are in the best possible place.
Tomorrow we may get the determination of the Transplant Team and yes, I mean, “team,” there are over a dozen doctors involved in this orchestration.
I look at my little boy and I admire who he is. He is only four years old, but he is so bright, he is aware of everything going on around him. I have fear for him even though I think he has none of what the future will bestow on him. He plays with his toys and asks us to change the channel to Handy Manny or Caillou, and puts in his requests for macaroni and cheese, or pizza, just like any other 4 year old.
On the inside, he is not. His doctors have called him a good actor. On the outside he is a happy little four year old, and on the inside he must have God’s hands pumping his heart for him because what they see on the echoes and MRI’S and monitors does not reflect the little boy playing on a mat on the floor of the pediatric ICU.
We have met with his transplant surgeon Dr. Lax, whom we are told patients come as far away as India and Japan to have perform these transplants. He has told us Aaron’s odds of survival, and explained to us what he must do to make this work.
If it were just a heart transplant I say that because that is how it has been told to us. It is not a normal surgery and no two could possibly be the same because his heart on the inside is only half a heart and has already been modified three times.
Where the transplant heart is going to need to be connected Aaron does not have the connections or valves. Where his lungs need to be connected he has no connection to his main artery. His IVC is interrupted - that means he does not get a good blood flow. There is not one part of his heart that is helping this come together easy, but I have so much faith; When I close my eyes I see God there with the surgeon. He has been there with us all along. He is the one that will make this whole thing come together.
We are here, so that alone is proof and Lord knows we had obstacles and I am sure there may be more. Don’t get me wrong - I have moments, a lot of them, when I am terrified and I can’t picture the day when they say okay we have the organs, we are ready, and we have to say goodbye to Aaron before surgery.
I can only do this with that blind faith that I have. We have no other option but every moment that we are together is so precious. Please cherish your moments with your children and rejoice in their health. I see moms with their children and I just long for those times when I did not have these worries.
I spend every moment thinking of the day when I don’t have to worry or listen to him breathe at night. I wish we could all be together as a family. Knowing what I know and that my boys and Mark are not with us. Oh, it just rips at my heart. When we are together I can promise it is so cherished.
I am so glad that Mark opened up and has put some of his thoughts to words. It is such a release. I think he is beginning to understand that. I lean on him a lot and he on me. We are so blessed to have each other.
I have seen him through such different eyes these past few years. We have gone through so much and we have a huge mountain ahead. I am positive that he will be by my side and we will grow old together. I just pray that all my children grow old and outlive us. I have spent many a night praying and thinking of the family that Aaron will receive the gift of organs. We have started to pray for them and I ask you to do the same. This fate will happen without any of our praying, but when we pray for Aaron’s miracle as a result we are praying for his life and for God to give him life.
The fate of the donor is happening without our prayers we just need to pray that God is with them when they are told that their Ethan passed away. We had everyone by our side at the hospital, even father Jordan somehow appeared that night at Kaiser Walnut Creek. In our lowest moment our God came to us, he came to us in our family that night and our church.
I pray that they are not alone that they have God to turn to and that He helps them up when they fall to the ground in disbelief - like we did.
I truly am so busy every moment with doctors and Aaron and trying to keep up with every detail of everything that happens with him. How much he is getting I know how much Milrinone and have they lowered it. I know how many inches his belly measured yesterday, or if his lungs always sound like that. Or the last 20 ml of fluid he had. I have to know, but why my son is covered from almost head to toe in massive scars or has so many IVs going in and out of his body that it is an orchestrated dance to get him in and out of that wagon.
I don’t know. I can’t think God chose this life for us. We have truly suffered more than most, but I do feel so blessed and so close to God with each breath that Aaron takes. I am thankful for every moment that he smiles at me or whispers “goodnight, I love you Mommy” without being prompted. I am thankful Aaron is the biggest gift that God has given me. I will cherish every day and moment because we are here and we have just started our climb.
For all of you at home reading this; thank you for keeping us in your prayers. God hears us all.
"Hi Friends!"
Thank you for all your support!
