Katy is fighting her way back from her last HPS flare-up. The last few weeks have been very hard, as most of you know. When Katy has a flare-up it depletes her energy. That is where she was when she started her Remicade treatment yesterday. She doesn’t remember being taken from one hospital room to another because she was sleeping so soundly when the nurses wheeled her bed down the hall. When the nurse had to wake her up she looked around in surprise and said, “What? Where am I?” We all laughed. That’s when you know you’ve had a great nap.
The Remicade treatment yesterday was just the beginning of a series of three treatments. Her next one is two weeks from yesterday and her third one is in four weeks. After that she will receive them every six to eight weeks for the rest of her life or until another drug is discovered to treat this syndrome. The treatments will take a total of four hours. There is a slow drip IV and then a one hour observation time afterwards to be sure there is no allergic reaction. Because it was her first treatment and not everything was ready when we got to the hospital, we were there a total of seven hours. Katy and I talked about taking along some projects to do next time so we can redeem the time.
The nurse who gave the Remicade treatment was very informative. She talked to me about how Katy might feel the next two days and what to expect. I am finding her information has already helped us today. She told me that after the second day, Katy should start feeling the full effect of the drug and begin to feel better.
Thank you for the encouraging comments on the last post. I read it to Katy and she said, “The focus is on Him as it should be.” Her friendship with her heavenly Father is constant. We’ve been thanking Him out loud throughout the day for Remicade, for pain medication that works, for family and friends who pray without ceasing, and for giving us a future and a hope.Comments: