April 28th, 10pm

From Christine: Emotionally today was another hard day, but I had some great visitors to help me get through it.

Since the last post, Christine has had a visit from the PCP on her case, who seemed displeased with the change in antibiotics and indicated that Christine could be here into next week (i.e., more than one more week). We weren't sure why she wasn't up to speed on the decisions by Derm and internal medicine. It sounds like they will taper her steroids more slowly this time to hopefully ensure that her body's autoimmune response is really finished.

Christine had quite a few visitors this afternoon, starting with Kimmy who washed her feet, cut her toe nails, removed her old nail polish, and painted them again with a pretty teal color (see the picture below). Christine also had several work friends stop by, one of whom brought mango frozen yogurt and another of whom brought an amazing care package filled with a homemade "birch box" (a box of beauty care samples that Christine used to receive in the mail), a funny card, a pair of really soft baggy pajamas to wear when her skin is healed, and a large fuzzy blanket. Dan, Purvi, and our three cousins came in for a bit armed with McDonalds french fries, and Dad was here most of the day with Mom and Tommy. As I said earlier, I am on night duty tonight and Christine is all ready for bed and tucked in. She might have one more visitor from work, and she has a couple more medicines to take before we finally go to sleep. David came in with me and got takeout for the three of us at Havard Gardens, which was fun. We also all munched on some home made cookie dough for dessert.

I think that's it for today's updates! We expect to see Aunt Cindy tomorrow morning and Grandpa George and Linda at lunch time. Who knows who else might stop in! Good night for now. Let's send good thoughts to Christine's body to heal up and stop the progression of this unexpected, slightly worrisome, and perplexing wave.

April 28th, 2:30pm

It has been about three weeks since Christine's first symptoms, and just under three weeks since she was admitted to the hospital. She thinks the rash has spread a bit more on her legs today, and doesn't feel any improvement in the other affected areas. Her internal medicine team decided this morning to switch her antibiotic to the other antibiotic that her UTI strain responded too, even though that means that she will have to start the 10 day course all over again. Derm came by (a different attending and resident than we normally see because it's the weekend) and they agreed with the ongoing explanation that this new flare is because the steroids were reduced too quickly. They said that long term steroids are avoided at all costs, and so they try to reduce them as quickly as possible but its not an exact science so this can happen. They are essentially 100% positive that it isn't either of the antibiotics she has been taking, but they were fine with internal medicine making the change to the third antibiotic anyway. My mom pointed out that she was a little frustrated that Derm had fussed around testing Christine for HSV1 rather than increasing her steroids and trying to curb this flare sooner, but this Derm attending explained that it was absolutely essential that they rule out HSV1 before increasing the steroids because taking high doses of steroids with an HSV1 flare could have killed her. Her HSV1 culture was still negative as of yesterday, so that is reassuring. Today's Derm duo also said that because her skin hasn't separated or opened up yet she can use a steroid cream on her skin to try and stop the inflammation from getting worse and the blistering we observed last time from happening. We weren't able to do this with the first outbreak because by the time she was diagnosed the skin had already begun to separate and blister, making it too fragile for a steroid cream. Opthamology also came by because Christine feels like she has tons of sand in her eyes and that her vision is getting continually blurrier, but they said they did not see any signs of lesions or inflammation in her eyes and the irritation is because of dry eyes - a condition she is likely going to struggle with long term as a result of the SJS.

I will be heading in to the hospital soon to stay with her tonight as Mom could use a night off. Christine and I plan to play some card games, and have take out dinner with Dad and David. If there are any new developments, I will post again later! We also learned today that Christine will be hospitalized until all signs of a flare have passed and they have tapered the steroids back down.