Saturday, September 15, 2012

Update on Addi 2..

Here is the latest update on our heart friend Addi from her mom:

The Wait

Posted 32 minutes ago
Addison is officially on the United Network for Organ sharing transplant list as of yesterday at 5:00pm. She has been classified as a 1A. It was decided by her transplant team that it needed to be done and waiting is not an option as we are out of all surgical options. Her PRA levels are 55% which is another concern but she only reacted to 1 antibody and that antibody only runs in less than 2% of the population. Our biggest challenges now are 1. Getting a heart in time and 2. The actual surgery itself. Addison is considered very high risk and they are concerned with all her scar tissue they may not be able to control the bleeding.
It was confirmed that Addison did have atrial flutters as well as at least one MI heart attack. We were told this does at times happen in HLHS and atrial flutters can be common after Fontan especially with her tricuspid valve regurgitation. No warnings. Which kills me.
I do question if doing the fontan was the right choice but I have to stop. It was the best choice at the time and at the time Addison was a good canadate. Addison just falls into the category as with HLHS "it happens" no one saw it coming and it just happened so fast. I keep looking at pictures of just 6 days ago and everything was fine it happened so rapid. She had a good echo not even 3 weeks prior. We are very lucky by the grace of God she is still with us.
As of this hour Addison's lactate is a 1.7. She was at 9 on Wedesday. She is fighting with all she has. She is on epinephrine, heparin, milrinone, amiodarone, lasix and precedex. She is on 2 liters of oxygen and TPN. Her flutters are under control as well as some pain. She doesn't feel good as you can imagine. We need a heart. It is the most helpless feeling I have ever had.
We met our transplant coordinator, transplant doctors and team. Thankfully we like them all. We are very blessed to be at one of the biggest transplant centers in the US and Addison's previous surgeon Dave Campbell is one of the best transplant surgeons in the nations. We are very blessed and thankful to be surrounded by such dedicated professionals saving our daughter, please pray for them.
As of now we are focusing on what life will be like after Transplant. The thought of pink lips and toes. A little girl who can run, play and laugh. At first it hit me we will be here for Christmas for a second time and I lost it. But then reality hit and I realized Please God let us still be here at Christmas let us have our daughter turn 4 in November, please God I'll do anything, LET HER BE HERE.
Please pray, pray for Addison's heart to continue to hold its own until she gets her gift. Pray for the surgeons, nurses and doctors, to focus on Addison as they give everything of themselves in order to save my child. Please pray for the family who will soon give selflessly in such a horrid time of grief in order to save my daughters life. Continue to pray. It's working...... Until then we wait and live faithfully in His plan.

Please continue to pray for Addi and her family.  Even though Addi is listed for a new heart, God only knows how long it will take.  Also, please pray for the family that will give the biggest gift in a time of grief for Addi.  Today I hold my Raygen extra tight and I'm trying not to let the panic of the possibility of the SOMEDAYS, if you know what I mean, get to me.  I cry in fear, sadness, and hope all the time.  Emotions are going like crazy since Addi has been in the hospital.  I am going to follow Angela's (Addi's mom) plan and go spend some "family time" and not waste a second not enjoying my baby girl today.