April 9th-15th

Prior to April 9th: Most of the details of what happened with the development of SJS are posted on the "About Christine" page (click here). However, the short story is that she first felt like she had a yeast infection and itchy eyes. This progressed into sores in her mouth, general face inflammation  and then a thick layer on her tongue and difficulty breathing. The last thing to form was a rash. Throughout the development of these symptoms Christine visited the ER four times, and her PCP once, before they were able to diagnose her with Stevens Johnson Syndrome.

April 9th & 10th: We came to the hospital because Christine's tongue was swelling, she was throwing up, and having trouble breathing. We were brought straight to acute care in the hospital, where they noted the start of her rash and gave her an eppy. The eppy helped with her throat swelling and breathing, but she still had so much gunk in her mouth that she was continually throwing up. They admitted her to the observation unit at 4am, and throughout the evening I remember hearing the doctors talking among themselves about Stevens Johnson. Between the hours of 4am and 7am Christine was basically crawling out of her skin itching as the rash progressed. I napped for an hour or two in a broken recliner. Throughout the day the rash continued to get worse, and the white film on her tongue worsened. At one point the entire top layer of her tongue sloughed off in a thick sheet. Her tongue was swollen, and she was incredibly uncomfortable. Late in the morning a Dermatology resident stopped by to hear her story, take pictures, and look her over head to toe. In the late afternoon he returned with his attending and a team of dermatology interns, and Christine was diagnosed with Stevens Johnson Syndrome. At 8pm she was fully admitted to MGH, and began a course of pain medication and steroids, among other things.

April 11th & 12th: Christine's pain continued, and as predicted things got worse rather than better. She had an amazing team of doctors working with her, from every department. Urology, respiratory, gynecology, ophthalmology  general teams, etc. were all checking in on her. The rash continued to spread and became very red in color. Most concerning over these days was her O2 saturation, at least from our perspective. Her levels kept dropping and she had a horrible cough. They watched closely for pneumonia, and for evidence of sloughing and inflammation in her lungs. An intubation team was called in three times as a precautionary measure, but luckily they were never needed.

April 13th-15th: The rash started to blister and they began to use the Vaseline soaked gauze to keep the wounds moist and clean. It was a weekend, and so there were fewer doctors stopping by. Christine had a very difficult time getting out of bed because of the pain of the blisters and lack of strength, so the nurse innovated a way to lift her up with a flat sheet. The blisters continued to grow and were enormous in size. Her feet were very blistered and swollen. It was definitely a rough weekend, but she pulled through and had amazing nurses to support her. There was much discussion of whether she needed to be moved to the burn unit, but in the end it was decided that the best place care for her would be right where she is.

April 18th, 3:30pm

From Christine: Today has been better than yesterday. I really appreciate all of the messages people have been sending me. 

Today has indeed been a much better day than yesterday. It has actually been pretty uneventful, so it feels like there is less to write about. I'm sure I'll manage to fill the space with something though! Her skin looks very similar to yesterday, with a few new open spots from blisters that have pulled off. Her general pain, discomfort, and attitude are much improved though. The doctors are all thinking she is starting to look better as well.

I arrived at the hospital around 10:15 this morning, armed with hot coffee for Mom. Christine was just needing to go to the bathroom, which ended up timing well with Derm coming to help with her bandages at 11:00. They didn't lance any new blisters today.

After she was bandaged up Grandpa George and Linda stopped in to chat for awhile, and then the three of us we went to the cafeteria for lunch while Christine ate an ENTIRE grilled cheese sandwich in her room. Mom, Grammy Pat, and Aunt Cindy sat with Christine while she ate. Then Grandpa, Linda, and I came back to the room for a bit so they could say goodbye while the rest of the crew went down for some lunch.

Now its just Mom, Tommy, and I in the room. We are expecting a flurry of doctors to stop by as the day ends - the "pain doctors" were just in, and her PCP. Mom and Tommy will be leaving soon to go for a walk and have dinner as Mom has not really left the hospital since the weekend. I will sit with her while they are gone, and David will join me after he gets out of work. Grandpa John and Kimmy might be stopping by later as well.