The next week was a maze of doctors visits, instacare visits, ER visits, and consultations with more doctors. She was “diagnosed” with all the common problems but didn’t respond to anything. She developed a mystery rash, and every explanation was given, but not supported by the lab work. The only other possibility was linked to a new medication that she was taking, and there was the possibility that she may be developing an incredibly rare syndrome that was so rare most doctors in our area had only seen it once, if they had seen it at all. We were told not to worry about it because it was really, really unlikely. Not only that you would know it if you had it because your skin would start falling off. Yes, we had the right rash, but no skin was falling off.
As we treated the symptoms and nothing seemed to help. I became unusually concerned. Even Katie became unusually concerned. I had downloaded a new song to learn on the piano that brought me great peace. It was an arrangement of “Be Still My Soul.” I played it often. I felt myself having less and less interest in daily activities as I began to focus on Katie. The Lord was preparing us for a horrific experience. It was late Thursday night when we noticed the most disturbing symptoms yet. Katie’s mouth was too inflamed and pussy to eat or drink. She had completely lost any sense of taste, and she did develop some blisters that were the first definitive sign that we were probably looking at Stevens Johnsons Syndrome, and yes, pieces of her skin may begin to fall off soon. It was disturbing, but in retrospect, that week had prepared us emotionally.