Saturday, March 10, 2007

It Was Nothing, They Think

Dr. Harris phoned yesterday. Dr. Smoot has been on transplant service for the past couple of weeks so she has been "crazy" according to her assistant. I won't be surprised if we hear from her over the weekend or see her tomorrow when we are admitted, but I wasn't able to connect with her yesterday. Her assistant also mentioned that Dr. Smoot was waiting for a call from our insurance company because they had approved only a 23 hour stay for Annie's cath. Ahhh, insurance.

As best I can gather, subsequent tests -- at least the ones that are back -- indicate that Annie may have something they have seen in one (yes, one) other child: transient methylmalonic acidemia. Translation (I think) is that she may have methylmalonic acid present in her urine sometimes but it doesn't mean anything is wrong. The B12 test isn't back actually, but I guess acylcarnitine tests came back negative. I assume that means whatever was indicated by the methylmalonic acid in her urine was followed up by the acylcarnitine test (related to fatty acid oxidation issues and about 15 inborn metabolic disorders), but when that came back negative it threw them back to the transient methylmalonic acidemia. Meanwhile, they are planning to give Annie B12 just to be on the safe side. They'll also -- surprise, surprise -- run a few more blood tests when we're admitted tomorrow.

The positive -- I think, I think, I think -- is that they haven't found any of the really nasty metabolic issues in all of their digging around. Dr. Harris didn't say that to me exactly and I had hung up before I connected those dots, but I think if all of the metabolic testing has come to a dead end that is, in some ways, a good thing. As many of you know, we have been sweating out several dire metabolic issues for which there is very little, if any, treatment.

Meanwhile, Annie continues to gain weight, averaging a little over an ounce per day. That's TERRIFIC for her! She was 11 lbs. 13. 6 ounces at the doctor's office on Thursday (hi everyone at Willow Bend!). As you can see from the pictures we took for Scott's birthday (previous post), she's starting to look a bit ... well, chunky. It's a great thing.

Thanks to everyone who has sent their good wishes and prayers for Monday. We need 'em! The idea of handing a happy, cooing little baby over for sedation and a test that is going to make her wake up sore and uncomfortable is driving me a bit crazy. The good news is that Annie has no idea and doesn't have to spend time worrying and anticipating it like we do! (I can't even imagine going through it with a child Jamie's age, but I'm sure we'll be doing these regularly with Annie so we'll learn sometime.)

Finally, our special good thoughts go out to Uncle Bill and his family as well as Aunt Beth and her family. We are thinking about you all. Speedy recovery, Beth and Bill!

2 comments:

Anonymous said...

Insurance companies - I hate'em! OK, that's a strong word, I dislike them intensely, is that better? But it's not just a cath, right? I mean there's blood tests, heart monititoring, vitals, conferences, results analysis, discussions - all those things. Blasted insurance companies...Well, enough blogging on the insurance dodos...Hope everything goes your way this week! Mike F

Anonymous said...

Annie and Jamie both look great in those pictures! I just wanted you and Scott to know that I will be thinking about you both and Annie and what she's going through tomorrow. Remember that if you or your folks need anything just let us know.
Heather, Tate and Jack