October 11-14: Pulmonary function test

Mina Brigitta had a rough day today. She had to get up early and wasn't allowed any breakfast because she had a pulmonary function test scheduled at 9:00. For the test, they give her some light anasthesia to make her go to sleep, then put her in a glass box and pump her lungs full of air. She had a baseline test done before the transplant. This test was to determine if either the radiation or the GVHD had caused any lung damage. Keri said Mina Brigitta took her "sleepy juice" like a champ, but was kind of loopy all day. She slept all morning at the hospital, came home and had lunch, then slept all afternoon. She fell down three times and bonked her head. I watched her lean over a bit too far from her dinner chair and fall onto her head on the wood floor. It's a bit scary. We were happy when she wanted to go to bed early, and hope she'll be her normal self in the morning.

When the test was all over, Keri called and asked me if I'd explained to her that they were testing her lungs, because when they got there Mina Brigitta started breathing loudly in and out. I hadn't. We figure she must have remembered that test from before.

The news from the test was great! She's showing no signs of damage, in fact her pulmonary function was better than last spring, which isn't too surprising because of the respiratory syncytial virus she had last winter. They even said her pulmonary function was better than average!

The other good news we got this week was that her cortisone test came back good, so they took her off the steriods completely. This is the first drug they've dropped, so it's kind of a big milestone. We'll need to watch her very carefully, and it's still worrisome that this rash on her neck isn't going away. But it doesn't seem to be worse either, despite dropping the steroids and reducing her cyclosporine dose.

I did have a moment that sent a chill down my spine. Mina Brigitta has had a hemangioma on her back since she was about three months old. They scanned it during her initial treatment and didn't think it looked worrisome, then did a biopsy before her transplant which came up negative for cancer cells. It went down each time during chemo, which I guess is common, but then grew back when the chemo was done. I hadn't thought about it for months, because it seemed to have completely disappeared with the radiation. The other day I felt it again. I'm sure it's nothing, just a sign that time has passed and her body is recovering from the treatment. But it was a sobering moment nonetheless, because it brought some of the realities of her current situation back close to the surface.