So today Ava had her echocardiogram at 9:00 am, and at 12:00 pm I was told by our Nurse Practioner that Ava’s echo did not show any improvement in function. Her echo was done by a tech, but finished off by a doctor who is number 2 in the country (or the world?) at reading function echo’s, so there is no room for doubt.
Ava is not getting her Glenn surgery.
Not much more was said today about the plan going forward other than we know that the unspoken outcome of all this is that Ava will likely need to be listed for heart transplant. I was able to meet with our cardiologist and he said that sometimes children get listed for heart transplants because their function is bad, but then their function gets better and they get taken off the list. I asked if there would be a concern that Ava might out-grow her shunt before a new heart came in, but he assured me that she has ways to go before they would be worried about that, so that’s good. And it’s not like we are ever close to getting listed for a heart anyway, all we know is that they will again discuss her next week at surgical rounds and then hopefully come to us with some plans going forward.
So it’s not the best news to end the week off with. But Ava herself is doing great.. she slept most of the day because her echo today was a sedated one and that really wiped her out. But later in the day we were able to get on the floor and do her little excerise regime as laid out by her occupational therapist, and she also breastfed twice today because she was so hungry from not eating for hours before her echo. I always enjoy the time I spend with her and it makes my momma’s heart glad.
And I get to see my family tomorrow! I’m taking the train home tomorrow and will help Jason pack the kids up to move here, so it will be so wonderful to see the rest of the kids as I haven’t seen them in two weeks – it feels like forever.
Thanks again for all your prayers and encouragement. It feels like this journey has just turned the corner and will be taking us down a new road. I guess now we just wait and see what God has planned for us and our little Ava.