Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: August 6 2001

Robert BMT + 18

Today was a celebration day. Robert’s white blood cell count went from .1 to .2. It is such a minimal change but the only change we have seen in 18 days. If the number goes up tomorrow we will know it was real. This was really neat because Robert’s Uncle Tom stayed with Robert all last night so that Mark could stay home and snore so loud the neighbors wanted to know when he was returning to the hospital. It was very nice for us to spend the weekend home celebrating Mark’s birthday together.

Robert’s blood pressure was still high after his platelet transfusion last night and he still needs the supplemental dose of nifedipine to control it. They reduced the dose by 1/3 so that his heart rate wouldn’t increase too much. He is doing fine without oxygen and his canules and duoderm have been removed.

My sisters Judy, Nancy and Margie came to visit separately, separately. It was nice to sit around and talk.

Thanks for all your good wishes and prayers.