Back at Children's

We're here and settled in. We've signed consent forms, heard about all of the nasty possibilities and been briefed on what to expect tomorrow. Annie will be the first case of the morning, with Dr. Smoot, Dr. Lock (Chief of Cardiology here at Children's) and another cardiologist whose name escapes me working on her. There will also be an anesthesiologist present, which isn't always the case with these procedures. (Sometimes the cardiologists do the anesthesia themselves, but there was concern about Annie's jaw formation so they called in the anesthesiology team. The doc who saw her didn't even mention it, so I brought it up. He said not to worry -- it didn't look bad to him at all.) There also will be a liaison nurse who will report Annie's progress and condition to us throughout the procedure.

I believe they are still planning on giving Annie supplemental B12. I think they only do that through a very painful shot, so we've asked if they will do the shot while she's sedated. Hey, why not? After just going through the IV, I'm glad we asked! Annie usually is happy as can be through blood draws and pokes and prods (smiled through her chest x-rays tonight as well), but this IV didn't go so well tonight. Ugh. If only I could do all of this in her place! To top it off, Annie has been chowing on her left fist and fingers lately ... but the IV is in that hand and wrapped up like crazy. She got very fussy when she tried to get her hand into her mouth. She is just NEVER fussy! I haven't learned what to do for her when she's like that because I've never had to. Nursing always worked for Jamie, but Annie doesn't nurse. Sigh.

The good news is that the resident assigned to us this visit seemed happy with Annie's muscle tone. Apparently the hypotonia (floppiness or low muscle tone) can progress with some metabolic issues, but Annie's definitely has not progressed. She did quite well tonight for the resident, as a matter of fact! I was impressed and glad to see it. Maybe the hypotonia ISN'T related to the cardiomyopathy ...?!?? She's definitely not where she should be for her age, but she is doing things that she wasn't doing at all just a week or two ago. We'll take it!

We didn't see the genetics/metabolism fellow so we don't know much more than that right now. Dr. Harris will be in tomorrow, so I'm hoping to have a good long chat with him and clarify all of the methylmalonic acid/fatty acid oxidation/etc stuff.

We'll post during the cath as we get updates, if possible. Otherwise, it will have to wait until Annie is out of recovery and we're back in our room. 'Night