Mar 21, 2019 Latest post:
Mar 26, 2019
For those of you new to Ava's heart story, she was born with a congenital heart condition called Tetralogy of Fallot, and at 5 months old, had a successful open heart surgery to fix the hole in her heart. Very unexpectedly, we found out last August that her pulmonary valve has become severely compromised. It is currently working at 133% of a normal child's heart. It is over-stressed and as a result, has enlarged her right ventricle to almost 2x the desired size. Therefore, she will have her pulmonary valve completely replaced on March 22nd.
This intervention now will a) put in a fully functioning valve which will transport 100% of the blood to the lungs with just one single squeeze each time, b) help reverse the potentially irreparable harm to her right ventricle by reducing the stress on it, thereby decreasing the inflammation, and c) through these first two improvements, also hopefully help her avoid a defibrillator as an adult.
She will need her pulmonary valve replaced not just once, but approximately every ten years or so as each valve wears out, culminating eventually in another open heart surgery one day to remove all the valves they will place in there like nesting dolls over the years. We have developed a very strong, experience-based belief in the power of modern medicine and medical advancement, so we are hopeful that medical geniuses will one day find another way.
But until then, we press forward with her first pulmonary valve replacement. A bright spot in this journey has been having the very great fortune to gain introduction to the most excellent cardiac team possible at Cedars-Sinai Hospital in Los Angeles. Dr. Zahn helped saved Jimmy Kimmel's baby last year who was born with the same heart condition as Ava. He very graciously agreed to take on Ava's case. So, we are packing our bags and taking Ava to LA for this procedure. Cedars-Sinai Congenital Heart Disease program is ground zero for some truly revolutionary work surrounding minimally invasive procedures such as this trans-catheter valve replacement that Ava is having (where they'll access her heart via a catheter up through the groin vs. open heart surgery). We believe she is in the best. possible. hands.
Ava will have pre-op on Thursday, March 21st. Game day starts with a 6am report-time on Friday, March 22nd, with a "Hospital Hotel stay" (as I describe it to her) in the Cardiac ICU afterwards. We will be staying in LA into the following week until she has completed her follow-ups with Dr. Zahn and is cleared to fly home.
Ava has anxiety about this for sure. There is no avoiding that. She obviously doesn't remember her first surgery, but she is fully aware of this one. We are doing a lot of prep with her to make it as positive an experience as possible, focusing on the fun (but super chill) things that we'll do during our visit.