So the cath was done around 2:40! It was done much quicker than anticipated, so that's cool! Unfortunately there wasn't a ton good news from it, but I'll start with the good points...
- Her collateral veins that she has created because of the clots are doing well! Her body created a relatively large one which is good.
- The IVC (which would be used in the Fontan) is at 15.5mm and we needed it to be at 15mm to be able to do the next surgery.
- The pulmonary valve pressures were good!
Now with the tricky part... Her aortic valve has big issues. The leak that they have tried to correct in surgery (last August) is not resolving and is worse off than previously thought. It is creating pressure issues which is not allowing enough blood flow for to her heart (coronary arteries).
So what does that mean now?
Two possible options: Fontan surgery with an aortic replacement or a heart transplant.
Dr. Hill will be talking with Dr. Nasirof and Dr. Watanabe (surgeons) about the risk factors in the Fontan option tonight. Dr. Hill has never seen an aortic valve replacement on a single ventricle child. Shocker right? HAHA! Little Ella... Always trying to test the doctors... They will also be contacting Dr. Hanley at Stanford to get his input, but this won't be until Monday.
The heart transplant would be risky, but possibly less risky than the Fontan/aortic valve replacement--we are still waiting to hear what the surgeons say. The transplant would also mean that we would have to be down at Stanford for three months. BUT it would mean that she could live a "relatively normal" life.
There's risk in everything, but we know who holds her in His hands and there's no other place we'd rather have her.
Matt and I are still processing it all, especially because it was not what we anticipated... It's hard not to be frustrated or angry about it. Tonight we will stay at the Ronald McDonald House and mull it over. They are taking one med away and want to see how she reacts so we will be here for another 48 hours checking on that. We are going to try sprinting her off the vent while we are here as well.
Love,
Jillian
