He took blood tonight. He kept insisting that he didn't think we should take blood too much, and I tried to remind him we'd only taken it once in the last five weeks. She's been off the medicine she was given, which is great for B's but can mess with the stomach. Her numbers were all in the normal range, which is a good sign. I think this tilts it towards not B's, but I suppose it's possible she has a mild case. Either way, it means it's unlikely this will be a major challenge we're facing.
We have another appointment a week from tomorrow at University Hospital. We'll probably do blood and urine there one more time to make sure she's doing fine without medicine.
This has been a very strange episode. One of the things I did a few weeks ago was to join the sole internet group for patients with B's. It's really a hard disease, so I am having a little bit of survivor's guilt. A new member described how their son can't handle the main medicine used to treat it and is in the NICU on continuous IV's. It's made me a lot more aware of the burden of parenting and of the struggles people live with.
No comments:
Post a Comment