Although she's not by any means worse, we didn't get the news we'd hoped for that she's moving rapidly toward getting better enough for heart surgery. She's pretty much the same that she was 6 weeks ago.
It was discussed that we may go ahead and have the surgery anyway despite her lungs not getting better. That way at least her heart being fixed may improve her overall health and there is a window to jump in before she might start to get worse. The problem with doing it before her lung pressures were better though is that post-operatively she could be very delicate and take longer to recover. That's ok really, she's just very fragile and they will take their time getting her off the machines, etc.
She looks so good for now though that they are o.k. with letting us go until the middle of January for our next check up. At that point we'll do alot of tests so they can approve her for surgery, if that's what the team decides. The gagging she's doing is sort of undefined without a real worry. They did think maybe a little milk protein allergy was making it worse, so no peppermint ice cream for mom this Christmas :).
So, for now she's doing great and the path may look a little different than we'd first thought but that has sort of been the way things have gone from the start!
The car ride up was rainy and Ellie was not happy some of the way but was calm most of the day.
No shortage of nice, understanding people at the hospital.
Jeff and I competed with a little Scrabble. We celebrated any time we could use enough brain cells to get a word other than "go, and, or to" :).
Ellie gets some attention from her favorite nurse.
The doctor did some lovely artwork for us explaining a few new terms - we didn't think there were new things to learn but there are! This is a diagram of her heart, the holes, the vessels, the pressures, her on a time line, her reserve, the resistence she might start to develop to the meds, and the direction of her blood flow.
