A Concert and a Cath

Shebs made it through today's procedure with very little drama. After about three and a half hours in the cath lab she went down, still sedated, to get a CT scan of her chest, and then she was able to be extubated fairly quickly after getting back to her room. As she sits now she is breathing fairly well on high flow oxygen (which is a bit more respiratory support than she usually has), but hopefully that will only be temporary.

We've had a conversation with the cardiologist who performed the cath, so we have an idea of the findings. As usual however, there are no clear pictures. We really only know a little and we will likely learn more over the coming days about what it all means after we've had discussions with the doctors who know Cora best. We will also have a consultation with the Pulmonary Hypertension specialty team tomorrow.

What we know for sure (I think) is that the pressures in the right side of Cora's heart are elevated. We know that this is most likely attributed to her cardiomyopathy, and that her heart function, while improved from where it was when she was listed for transplant, has never been great. We also know for certain that Cora has a fundamental problem within her lungs, and that this affects her ability to effectively oxygenate her blood. We know that her liver continues to back up, and that she has a persistent problem getting fluid off her lungs. We know that overall, her heart is getting worse.

These are the few things we know. It's a small pile of information that is dwarfed by the large mountain of things that we don't know. Things that we may never know.

As I said, we will have conversations over the coming days wherein doctors, who are very educated and have a wealth of experience, will give us opinions on what is happening (a confluence of crappy things) and what can be done about it (very little). But in my experience, the only thing that matters is not what people think will happen, but what really does. It matters where we are and what we have today.

We were playing with Cora this morning before the cath. The nurses, my sister and I were dressing Cora up and posing her for photos. Our nurse laid blankets around her to hide the cords and tubes, and so that she could just be a baby in a blanket. There was lots of laughter and a warm and good feeling that was impossible to miss.

Our friend Liz came by to play violin for Cora and the other children on the unit. Cora kicked around and stared, fascinated, at Liz. Even though she may not be able to hear the music Liz was playing, it was obvious that she could feel it.

These are the beautiful moments that are much more definitive for me than predictions or prognoses.

All anyone can ever tell us is that they doubt our sweet and beautiful daughter can live easily or long in the state that she's in. They've been telling us that for months, and today's news was no different. The bottom line is that, of course that may and might be true. But I guess I'm not sure what exactly I can do with that information tonight, in this room at 9:00pm on a Wednesday, except just to go on alongside her, perfect little chubster that she is, and marvel at her, and love her, and help her to live life as fully and as fearlessly and as wonderfully as we can.

Cora is the perfect fifth member of our family. She has been since the moment she was born, and she will always be. And for whatever reason when I'm around her, no matter how much crappy news I hear, all I can feel is love.