I hope this beautiful weather finds you well and that you are beginning to see the signs of a beautiful spring. 

Aaron is doing well. We had a scare on his biopsy in February. It showed a slight rejection. Can you imagine? What would you have done?

My mind raced back to the months we spent in The University of California, San Francisco (UCSF) in the ICU and all the sleepless days and nights in the hospital here and in Los Angeles. All those hours he spent hooked up to the dialyses machine — that noise is still so clear in my head. I remember Aaron getting on the transplant list and waiting and waiting for our phone to ring.

In April, in the same sentence the Dr. saw some rejection he also said, “Well, if his kidneys reject we just will get him re-listed we don’t want to loose his heart, but his kidneys will definitely go first.”

HUH? I almost fell out of my chair — I couldn’t even respond to him. We spent a month of hell praying that the results would be clear. None of the other families that we had met like Aaron, had gone through this, but none of them were two major organ transplants either.

His cardiologist decided to wait just one-month before repeating the biopsy. The doctor repeated the biopsy in April; it came back with a perfect result.

The doctors seem to think it was a result of some changes they had made in his anti-rejection medication, at the time they had drastically reduced the amount of several, in order to save his kidneys any damage.  So, he is on a very altered treatment path than most other transplant patients. That being said, he is monitored more closely than most other transplant children are.

He will continue his monthly IVIG treatments, along with weekly clinic appointments.

He celebrated his 6th birthday on April 9^th, with very few guests due to his immunosuppression. We thought he would be ready for school this spring but his doctors have said to have him wait until the beginning of next school year. He is disappointed. Aaron is really looking forward to going to school and doing normal activities that other children are able to do.

Our family has grown so much wiser our relationship together has grown and our relationship with God is so much stronger. When you experience pain like no other and grief beyond imagination, you see that the time you have to spend is precious — every minute should be enjoyed and savored — whether at work or with your family, make the most of your life now. Don’t wait for something outside of yourself to make you happy — be happy now.

Our webpage is still up and we would greatly appreciate any donations you could pass on to us, through either the website or the Aaron Tanner heart foundation. There are no fundraisers planned and we have no other donations coming in. Financially it has become very difficult, the money you donate will help Aaron to thrive with this gift of life he has been given.

Thank you for your prayer and best wishes for Aaron and his family!

As you know Aaron Tanner is fighting the battle of his life. We are asking for an increase in prayers so that Aaron can receive the miracle of a heart and kidney transplant. Below are two links. The first link is a link to our blog page. There you can find updated information about Aaron and our family.

The second link is a link to our prayer page on Facebook. If you have a Facebook account, we would to have you part of our prayer page!

As always, we are extemely grateful for your prayers, good wishes and generosity.

Please feel free to share this link will all of your friends and family to increase prayers for Aaron.

• Save a Broken Heart
• Facebook

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.

Welcome Home Aaron and Elizabeth

Aaron arrived back home safely on Saturday. The little guy requires ’round the clock nursing and regular dialysis treatment due to his failing kidneys. Aaron must travel to San Francisco every other day, for three hours of kidney dialysis.

Elizabeth has posted a brief comment (see the side panel under “Recent Comments”) to the site. As is understandable, Elizabeth is feeling a bit overwhelmed at this time, but she promises to send an update just as soon as she is able to see daylight.

Reporter Laura Anthony, wrote an update on March 17, 2010 for ABC News 7. Read it here…
Toddler still waiting for dual transplants

More updates will be posted as they become available and you can be sure Elizabeth will let us know just as soon as she has news of the transplant surgery. Your continued prayers are greatly appreciated!

Posted to YouTube on December 16, 2009

Won’t you help to Save a Broken Heart?

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

Prayers for Noelle

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.

Aaron’s Heart is being Stressed

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.

Ready for Surgery

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

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. 

Wonderful Doctors

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.

Hospital Discharge

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.

God Loves the Little Children

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.

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.