Another Night in the Hospital

We're here in the hospital for at least one more night. Annie is doing really well and tolerating the medicine incredibly well -- they've bumped up the dose twice and her blood pressure is holding. She's also having no trouble with the fortified milk. I know she's put on some weight while we've been here, but I'm not sure how much.

Dr. Smoot came by around 7 last night, but things were still up in the air as everyone tried to decide what labwork to do. The other big question -- when to do the cath and muscle biopsy -- was still being decided as well. Dr. Smoot wanted to contact one particular doc to handle Annie's biopsy, so it's mostly a logistical issue.

I'm trying to figure out how to encapsulate all of the info we've gotten in the last 24 hours and it just seems impossible. The one thing that I am able to say without hesitation is that cardiomyopathy, and especially cardiomyopathy in children under the age of one, is complex. We see the doctors conferring outside our room and know that they are working their hardest to figure out what is going on with Annie. What can be ruled out? What are the other pieces to this puzzle? They are trying to track down everything they can right now so that they can have the best possible chance of understanding what is going on.

We were fairly certain we were going home tomorrow (if not late tonight) until labs from Annie's initial blood draw in NH came back. Something glucose related (having to do with fatty acid breakdown, I believe) came back slightly elevated. That means that Annie needs another draw after fasting at least four hours. Luckily, she sleeps through the night so they'll be able to do the test first thing when she wakes up tomorrow morning. If that test comes back within normal range, we'll be good to go home tomorrow. If it is too low, they will do some more tests and probably keep us longer while they work on tracking down what's going on.

I feel like I keep traveling over the same ground with Dr. Smoot (who is patient and wonderful, and I'm not just saying that since she got the blog address from us tonight!), but it all comes back to the complexity of cardiomyopathy in infants. Even then, I asked her if all of her infant cardiomyopathy cases are as complicated as Annie's and she said no. (In fact, she's not working this weekend but plans to come in if Annie's bloodwork comes back funky.) The in utero thickening of the left ventricle, the small jaw, and the hypotonia all contribute to the complexity.

Annie continues to look great, making it even harder to watch her go through all these tests. Today, she had an ultrasound of her head. Dr. Smoot said it would be good to have because it would be one of the pieces that the heart transplant team would need before moving forward with anything transplant-related. When I commented that it was shocking to be talking about heart transplant, she said it's just her perspective because she works on the transplant team. Then today, I commented that Annie's not on the transplant list yet (as in, one day at a time and at least she's not so sick that she's on the list) and Dr. Smoot said that another institution might already have placed her on the list. Yikes. My attempt at looking on the bright side backfired on me -- that was tough to hear! (In other conversations, Dr. Smoot has commented that she has seen kids with echos like Annie's look as good as Annie and others that were extremely sick, entubated, etc. -- all with the same echo presentation. Yesterday, I jokingly said something about "Look more sick, Annie!" when we were talking about getting a test scheduled for Annie. Dr. Smoot said "Oh, no, I've seen her echo. She has my attention and respect, believe me." Again, yikes.)

So where are we? We're waiting to see how Annie's glucose level comes back tomorrow morning. If it's good, we'll be headed home with Annie's two heart meds and we'll schedule her cath and muscle biopsy sometime in the next 2 - 4 weeks. (We'll also check in with the cardiologist in NH next week, in that case.) If her test is low, I think all bets are off and we'll be in the hospital at least a couple more days. At that point, they may decide to go ahead and schedule the cath while we're here this time. It really is one day at a time ....

P.S. Please help with a nice mystery ... we don't know who is responsible for Scott and Mom and Jamie returning to a plowed driveway yesterday. It's hard to imagine a plow driver got lost and just happened to plow our driveway, especially in light of all of the kindnesses we have received over the past week. Thank you, whoever was responsible!