April 27th 10:30am

From Christine: Had a little set back. Had a rough night. Cried a lot. Kind of scary. 

Well, this post is unfortunately not filled with good or hopeful news. Christine's face is blotchy and inflamed  her torso areas are blotchy and inflamed, and she has a new rash area on one of her thighs. It seems clear that this has spread, at least to a minor extent, to her skin. She still has ulcers (and some new ones) in her mouth and on her lips, and she has developed new ulcers in the mucosal areas of her genitals as well (same as before). The eye doctor came by last night to check on her eyes, and luckily there aren't any signs of inflammation there. She has dry eyes and so her eyes feel a bit sandy and she is tearing a lot because her eyes are over compensating for the dryness, but the doc said that her corneas are "pristine". We certainly hope this doesn't change as whatever this relapse is progresses.

We are trying to put our heads together and question the doctors as much as we can about what could be causing the flare. The decreased steroids is still a leading option, but I began to question them about the two antibiotics she has received for the UTI (which is apparently a pseudomonas infection that is a result of being in the hospital, not a typical UTI). One of the antibiotics, ceftriaxone, she received two IV doses of, with the last day being Tuesday (the new mouth sores appeared on Wednesday). The other antibiotic, an oral ciprofloxacin, she began taking 1-2 hours before the mouth flare up. I have found SJS case studies for both antibiotics, but more reports for the ceftriaxone. The doctors seem to think its INCREDIBLY unlikely its the cipro because the timeline is just too short. It's possible its the ceftriaxone, but she isn't taking that now and is on the increased steroids so there wouldn't be any change in treatment if it was. We ran all these questions and ideas by one of the PCPs on her case this morning, and she is going to talk to Derm. They have held off on the cipro so far, but will probably give it to her soon. They don't want her to miss a dose because of the severity of the UTI. The steroids already make her immunosuppressed, and the last thing she needs right now is a kidney infection.

We are waiting on Derm right now to see what they think about the new developments. I'll be here most of the day, Dad is probably coming back down today, Mom and Tommy are in here working/puttering on their laptops, and Christine is napping. Oh, and I forgot to mention the pain meds. They switched her from a PCA (IV administered) morphine drip to an oral oxycontin + morphine "clicker" doses (the ones she can give to herself every 10 min as needed). The oxycontin made her really nauseated yesterday and the day before, which was making her pretty miserable. Anti-nausea medicines weren't helping. Today they are switching her to oral morphine + the clicker morphine as she seems to do OK on this drug. So far she isn't feeling sick and hasn't complained too much about pain... though her mouth is obviously really bothering her.

I'll give another update later today when we know more.