Chugging Along

It definitely was a busy morning -- I can't believe it's almost 2. We've had another echo, met with the nutritionist, met with the geneticist, had chest x-rays, and met with Dr. Smoot (the doctor in charge of Annie's care). We're waiting on a neurologist, but I think that's about it for today.

The echo was ... ugly. The dilation of her left ventricle is severe, there's no doubt about it. It was easy to see it -- the left ventricle seemed to be as large as the rest of her heart combined. In fact, the size of the left ventricle is compressing her right ventricle. (It turns out that the pressures in her right ventricle are still good, though, so the compression hasn't affected the right side negatively yet.) Dr. Smoot came in to discuss the echo findings and agreed that the dilation is severe, meaning we're stepping up treatment plans. She said we need to get moving on treatment while we await other findings and she said that we need to be a bit aggressive to try and reduce the workload on her heart. For now, that means getting her started on an ACE inhibitor. She's also added an ultrasound of Annie's kidneys to the mix of tests and will be doing another blood draw soon. (They're still deciding which tests take priority with the little amount of blood they can take. I have a comical image of all the specialists arguing over whose test is most important in my head.)

Scott asked Dr. Smoot when we might expect to see an improvement in her heart. She said that she wouldn't expect to see any 'recovery' anytime soon, but would be happy to see no more progression for now. i.e. Halting the dilation where it is would be a victory for now. Again, a lot of the concern comes with how quickly she went from a normal echo (the day after birth) to a severely abnormal echo now at just three months of age. All of her "numbers" are good, so she's coping with it for now, but that doesn't rule out a precipitous decline based upon what they saw in the echo this morning.

We're still not sure about a cardiac catheterization or the skeletal muscle biopsy -- they're talking about maybe sending us home and having us come back in a few weeks for that. I think it is still dependent upon the big picture and how it comes together with the various specialists and their pieces of the puzzle, if any.

We don't know much more than we did before, but I have to admit that my heart sank when I saw her echo today. It was so apparent! Still, I'm glad to be here and moving forward in some form. And the good news is that everyone braved the snow and my sweet Jamie is here along with Scott and my mother. It's WONDERFUL to have the company after spending the night alone (not even a dog asleep on my legs!) and going through all of the tests alone this morning. (They arrived right after the final test for the morning -- the chest x-rays. Annie's legs were strapped down and I had to hold her arms above her head. She calmly watched the machine and let me hold her like that without one single peep. She really is a trooper and it has become evident to me -- hooray -- that she has her father's temperament, not mine!) So I'm off to take a bit of a walk with Jamie and my mom and see something beside the inside of this room!

Thank you again, for all of the e-mails and posts (and even the hospital survival bag -- Teresa, you're amazing!). They really make me feel less alone here.