From Christine: Had a little unexplained setback today. Am really, really a reptile now.
Today started off pretty uneventful, but ended up a little bit nerve wracking. Dad came in early and had breakfast with us. Christine ate a good breakfast, snack, lunch, and two milkshakes. A nutritionist came by to collect her "food tracking sheets", and PT came by to do a few strength exercises with her. She took three walks down the hall and back, each time going just a few steps further. It's quite exhausting and painful for her to walk, but she is extremely determined and willing to push herself. Her skin is looking even better as well.
Grammy Pat and Grandpa John came by around lunch time, and Christine was given her first oral dose of antibiotics to treat the urinary tract infection that she developed. About an hour after the antibiotics, Christine noticed new lesions on her lips and began to panic as she felt them spread to throughout her tongue, throat, and mouth. Her lips and tongue were also swollen. We called the nurse at the first signs and she had both her general doctor team and the Derm team come by to take a look. Nobody felt it could possibly be the oral antibiotics as not enough time had passed for a reaction like that. The doctors have been tapering off her steroids, so one theory was that they tapered too quickly and so the inflammation in her mouth flared up again. They also took a cell sample to test for any kind of infection.
It was scary for Christine and I because the sores on her lips at least look very similar to the sores she had when this first started to get really bad. The ones in her mouth are harder to evaluate as I never saw the ones from before up close. Dermatology finds the sores interesting because of their geometry and noted that its unusual to see sores like that with SJS, but because they look similar to what Christine and I first observed they say its certainly conceivable they present in Christine like this. Unfortunately, we don't have any pictures from the days prior to her entering the hospital to share with the doctors. Nobody seems to think it could be a "second round" of SJS or anything like that (I guess that doesn't really happen), so the leading theories for the sores are some kind of infection or just a flare up as a result of the decreased steroids. I think that only time will answer that question. Benedryl helped with the swelling, but at bedtime the sores were still there.
Even with the mouth issues, her skin is continuing to improve each day. She pulled off large sheets of dried skin from her hands today (we have a picture I will try to post tomorrow), and skin is continually flaking off from other places. As gross as that sounds, the good news is that means she has nice healthy skin underneath! The bad news is that she is really itchy as a result, and shedding like a reptile all of her hospital room. We are super thankful that the cleaning staff are so friendly and do such a great job cleaning her room twice a day!
Our family friend Heather also stopped by today, and I know seeing her cheered Christine up while she was feeling anxious about the mouth developments. Her boss from Mass Eye and Ear came by to say hello, it's been so nice that she has checked in so many times. Christine was very excited to have her favorite nurse Jena as her night nurse. Mom is back on duty now (I am at home) and Uncle Dan and Anika stopped by when Mom returned to say a quick hello. After they left Mom, Christine, and I got take out together because Christine was craving the same mac and cheese and french fries that she had had the night before. We managed to laugh a little bit, even with the apprehension of the mouth sores hanging over our head.
Christine also got quite a few gifts today! Flowers from her long time friend Janie, five cards from her friend Jackie, a card from our cousins, a huge floppy stuffed dog from our friend James, and a gift that had arrived at my house that she doesn't even know about yet! Oh, and yesterday she got more flowers from her friend Rachel at work. Everyone who comes into her room comments on how decorated it is and how great it smells. Christine is so lucky to have the support system she does. It really makes a difference in times like these.
