Form Christine: I got my hair washed for real today, and it made my day. I kicked Mom out, she needed a break. A nurse I like very much and I are going it alone.
Day 20th in hotel MGH. Christine's skin color is a little less red than the last two days, but she has a burning sensation in all of the red areas. Also, the mucosal sores are still quite painful and have not really started to heal yet. Because of the increase in steroids and need to re-taper slowly, Christine will probably be in the hospital several more days, but it's unclear how long total. Nobody has really mentioned discharge in the last couple of days.
Derm came by this morning and said they were quite sure that this was not a second outbreak of SJS, but it was conceivable that if the steroids were lowered before the outbreak in the mucosal areas had finished they would have re-erupted (nothing really new). The red areas on her skin that "came back" do not look like SJS to them, and they think the inflammation and discomfort might be a secondary issue such as nerve sensitivity. They called in the "pain doctors" to have them see if they could try a pain medication to target the nerves directly - they prescribed one to Christine but she doesn't notice a difference yet. Gynocology came by to check up on things and made no changes; her favorite eye doctor came by and said her eyes were still looking great. She does have pretty severe dry eyes that cause her discomfort, but artificial tears help a little.
One great thing that happened today was that a stress specialist that works on the floor came by and worked with Christine for about 45 minutes on relaxation and stress relief exercises. Stress relief has never been Christine's strong point, and needless to say 20 days in the hospital with high pain and uncertainty has not helped the situation. This woman was awesome though, and Christine said that the breathing/mediation exercises made an enormous difference. This woman will come by daily and also help teach Christine things she can do on her own after she goes home.
Christine's awesome nurse also managed to track down one of the basins the hair dressers use for washing hair in bed, and washed Christine's hair for her TWICE! Christine's hair looks totally normal now, and while her scalp is still peeling some it seems to be mostly healed. Christine is so lucky to have nurses that take such good care of her.
Aunt Cindy came in early with a chocolate croissant, Grandpa George and Linda stopped by around lunch time, and Grammy Pat (and I think Grandpa John?) came in a little bit later while Mom and Tommy were there. Christine has actually decided to spend the night alone tonight - she kicked Mom out because she wanted Mom to have a break! She is a little bit nervous about it, but she has a night nurse she really likes to help her get to the bathroom and get ready for bed and such. Everyone will be back in the morning to keep her company, and she can call Mom or I at any time if she needs to. I think that the more Christine does on her own the more independent she will feel, so this is a good thing.
That's it for today!
