Getting Settled at Children's

We finally got word to head down to Children's around 2:oo this afternoon. They had a bed reserved for us, but the doctor coordinating our admission was trying to get everything lined out for us. It became important to get us here before the snowstorm, too!

We've settled into our room and have started meeting some of the docs who will be working with Annie. The main doctor in charge of Annie's care is Dr. Smoot, a member of Children's cardiomyopathy team. We just met her and she had her first look at Annie -- and Annie put on quite a show of smiling and talking for her. Everyone keeps commenting on how good she looks and that is one reason that Dr. Smoot is saying that a cath may not be a given this visit. With Annie's 'floppiness' (she is hypotonic and does not have the muscle tone that she should have at this age), she is thinking that a skeletal muscle biopsy would actually give them more useful information. I asked her about some of the scarier metabolic diseases and she said that there really aren't any now for which there is absolutely nothing that can be done. That's great news! A heart transplant only sounds scary until you think there is a possibility that even THAT wouldn't be an option ....

Dr. Smoot talked about some of the medications that they will start Annie on, based upon the various test results. She will more than likely start on an ACE inhibitor and may also be started on some beta blockers. They're holding off on giving her anymore lasix right now until the decision is made regarding a catheterization.

In any event, we're settling in and know that nobody knows much of anything just yet. Blood draws will start anytime now (I'm sitting here dreading the next footfalls that come around the curtain in our room, knowing that's probably what is coming next) and we'll have another echo in the morning. We'll also be seeing a geneticist, neurologist, metabolic specialist, and a nutritionist (we'll probably be adding something to Annie's milk to try and get more calories into her -- but on their scale she was over 10 pounds for the first time ever today!). We definitely feel like we are in the best possible hands here. After the long weekend of waiting it's nice to feel like we're actively moving towards some answers. But it's sad to be here too, of course, because there are some very sick babies (including Annie's roommate who does not have the luxury of having any family with her and who just had some crisis while I was writing the blog -- her cries are killing me and I just want to cuddle her along with Annie!).

Speaking of luxury ... we've had several wonderful visitors at home in the last couple of days -- everyone bearing food or gifts and, most importantly, their wonderful thoughts and prayers for Annie. Thank you to everyone for helping see us through this incredibly tough week! I'll post a photo as soon as I can with Annie in her big hospital bed. :-)