Thursday, September 13, 2012

Update on Addi...

Here is the latest update from Addi's mom:


Posted 1 hour ago
I don't know where to start or even how to begin, the last 48 hours have been a blurr and feels like months.
Long story short Addi is in the fight for her life, I can barely type let alone say the words out loud.
Addison needs a heart transplant and needs one quicker than later. No option, no question. Addison took a drastic turn four days ago and has quickly declined. She has left her doctors baffled and literally not sleeping the last 48 hours wondering what went wrong so quickly. Going through thousands of echo images questioning everything since post Glenn.
It has been confirmed Addison at some point over the last 4 days started going into atrial flutters. We don't and will not know if these flutters are what caused the rapid right ventricle failure or vis versa. It also was determined on her recent echo this morning that a part of her echo was "echo bright" meaning she has a part of her heart that may have had a MI heart attack. Again, no known reason, no known cause and we don't know when. It was thought to do a heart cath but Addi isn't stable enough for the cath and the information gained from a cath doesn't change the outcome of all the issues.
Addison is and has been on for 48 hours now milrinone, heparin, epinephrine and lasix. Her function is not improving. We have ecmo on stand by in case it is needed and she is considered very high risk at this point.
We met with the transplant team and we have officially started the process of getting on the transplant list. I am beyond scared and or prepared as I have always hoped and prayed we could last longer with her own heart. I was very wrong. We have started the testing, prepping and paperwork to get on the list and if all goes it is assumed she will be officially on the list classified as a 1A by Wednesday. She is considered high risk with scar tissue. We are very blessed to have an amazing team on her side and the amazing cardiologist straight from Boston who has slept by her bed side the last two days. I have to keep faith everything is being done to save our daughter.
I am still in shock but ready to face it. I did not put my daughter through 3 open heart surgeries of hell just to keep her from heaven, for nothing, we will not give up. this is not the path we wanted for our daughter but when push comes to shove, we have no choice and giving up is not an option, she must survive.
We appreciate the continued prayers as from what I am hearing this is no cake walk. We can't come home and will be here for a long time...... When it comes to sweet Savannah this part is killing me. As you all know Savannah is attached to my hip, literally. My first born, my ray of sunshine. The details and plan for her is yet to be determined but it is thought that it will be best for her to stay in her own home, in her own school, continue with her gymnastics and keep routine. And come up to Denver on the weekend and or when there is no school. Details still to be worked out.
Thank you so much for the prayers. At this point we need specific prayer that Addison can stay off ecmo and doesn't go into cardiac arrest. Right now it's just a fight for survival. She is not intubated at this point and with her fontan anatomy we need to keep it this way. Please pray.
Thank you and as always we keep faithful in His plan.

Please add Addi to your prayer chains and pass her story along.  This sweet girl needs all our support.  I hug my Raygen extra hard lately.  I know as a heart mom that this is always a possibility, but no one should ever have to experience it especially our children.  I know I would give Raygen my heart and take her half a heart any day.  I know Addi's mom is thinking the same thing as I type.