Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: November 7, 2001

Robert’s Update BMT + 108

Mark is on his way to U.C.S.F with Robert and I am up waiting for him to let me know when they are settled into the room. One of Robert’s central lines showed a positive culture, meaning he has bacteria in one of his lines. They wanted to treat it immediately so Mark headed up soon after we received the call at 10:30 p.m.

Robert and I spent the yesterday over in the treatment and surgery area. He had a form of IVIG Tuesday morning. This is something they put through his central line to protect him from infection. Robert was happy enough there because I found three Barney tapes there that he didn’t have at home. I had asked the day before if the nurses could check out his central line site because I thought it looked a little red the last time I changed the dressing. So during the dressing change two nurses held Robert down while I performed the dressing change. They both felt the entrance site did not look good. They and the doctor agreed we should try paper tape for awhile and some ointment. The worse part of this is we have to change his dressing every day. They cultured both lines and found one of them contaminated.

Robert also had a bone biopsy yesterday. Dr. Cowan wants to see how well the donor’s bone marrow has taken. His white counts are still running low; 1.6-2.2. With the results of this test they can decide if they need to give Robert some more of his donor’s bone marrow. Dr. Cowan said this could be an outpatient activity.

Not the best news today. I sit here wondering if I was not careful enough when changing his lines (the usual blame oneself treatment). We will know more tomorrow.