Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: November 19, 2001

Robert’s Update BMT + 119

Dear Friends and Family, A little set back. We used to say if we wanted to go away, never tell Robert about our trip because something would always happen to him. There was blood around the central line last night so we changed his dressing. Again there was blood this morning. Nick and I took Robert to U.C.S.F this morning. On the way, he scared Nick and I half to death. I think he had a panic attack when we were about 60% of the way there. I thought he was in pain or something was wrong with his line. I pulled over and called 911 but calmed down by the time 911 answered. I also got a good look at him. He kept saying no, no, and no doctor.

Anyway, we continued to drive up a little faster and when I got to the parking garage I accidentally drove all the levels and had to go in and out again. Robert’s temperature was up by the time we had run to clinic. Dr Horn decided to give Robert a course of antibiotics, she was concerned they had made the opening for the central line too large and it was not healing well. They took cultures and admitted Robert for observation. Mark came up to stay with Robert so that I could take the other kids to Cayucos to the beach. I will drive up Wed. and switch. There is some good news. Robert is becoming more aware and is having more long term memory. He absolutely was trying to tell Nick and I he did not want to go to the hospital. To add injury to insult (or whatever that quote is) Mom forgot toys, extra videos and any Barney Videos (Brian please come to my rescue). Also, Dr. Horn even commented on how much more Robert is talking.