Hospital Update

One of the reasons I started blogging was Jane's incessant prodding. However, the other reason to start blogging was for my convenience of passing along upcoming medical news that some of y'all want, but that I'm not going to be able to repeat to everyone like I ought. So, for those of you who've asked to know what's happening, read on. For those of you who don't care diddly, click the x-button in the upper right corner.


Maggie's MRI and MRA was today. It was a long appointment, nearly an hour and a half in the machine. The initial comments from the consulting cardiologist are

1) the wall of her right ventricle is quite thickened, which should be a not-so-good thing. Nevertheless the RV is pumping very well, and the thickening doesn't appear to be giving her any problems.

2) the pulmonary artery is thin and needs replacing. (Not news.) However, the branches of the pulmonary artery are big and open and clear and well-developed. (Yee haw!) The PA valve is leaking, but minimally and continues to need no drugs to regulate the leakage.

3) concern for her pulse. As soon as the test ended, the cardiologist was full of questions about heart irregularities, and arranged for Mag to get over to the heart center for an EKG immediately. (It seemed to me that there was a bit of a sense of panic that they were trying to cover over. But maybe it would be better to assume that it was pushin' 5:00 and they just wanted to go home to supper and thus were rushed for happy reasons.) Doctor was pleased -- and a little slower and calmer -- when he saw the EKG. Her heart was regular, and the print-out looked lovely. I hauled out my handy-dandy notebook that we take to all her doctor appts, and I rattled off her pulse rate for every cardiology visit for the last two years, and that reassured the doctor somewhat, finding that her pulse today was only elevated by about 10-15% over normal (not nearly double, as he was thinking).

Now, for those of you who have asked about praying for her. The one thing I want in the next surgery is for another phenomenal valve. It's just a desire for a temporal gift, but I do want this. The scientist/humanist in me wants for God to guide the surgeon's choice of an artery like He did the last time, and get another valve that doesn't leak for a good long 10 years. That unbelievable valve has made our life so much simpler than it should've been, and until recently I just took it for granted. And I want God to give us another one of those.
However, the reality is that it probably wasn't so much in the artery chosen that particular day in 1996. The reality is that God has given us "daily bread" in sustaining that artery and valve in a way that is almost beyond belief to the doctors.

The other thing I've noticed is that Maggie is more nervous this time. Her last surgery was shortly before she turned 6. And that wasn't an open-heart. Today, she really tensed up and got scared when they put in the IV. I think we need to do some Lamaze-type lessons with her, teaching her to relax and breath. She is also full of questions about what's going to happen, but doesn't have the ability to understand the answers very well. The "Imperfect Homeschooler" posted on Sept 4 about kids with disabilities who are "invisible" as to their disability. I saw the problem with that today. The nurses and aides are helpful and kind, and everybody at Children's really impresses me as folks who make a hospital easier for kids. But many of them are talking over her head, which they wouldn't be if she looked like she had Down Syndrome. Five years ago the ENT told us that, in decades to come, people will begin to recognize the facial "look" that goes with VCFS, but they don't yet. It's going to be harder to comfort someone who's more aware than she's been for previous surgeries, and yet who can't understand a lot.