Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: May 28, 2002

BMT + 56

Robert had a very busy day. Everyone in the hospital has had to come by and see how well he is doing. They all said it was like the old days when they could hear Robert long before they saw him. He is saying as much as he was saying before he got so sick. He is giving very noisy kisses, telling secrets, lots of hugs and good-by when he gets tired of us. Robert woke up at 6:00 a.m. and went to bed at 10:00 p.m. with only about an hour and a half nap. He got out of bed and stood on his legs four times; although each time he leaned against something.

Robert was not happy with me; almost every time he looked at me I was trying to shove food in his mouth. They will not lower the TPN much until he starts eating more. He is getting 45 ounces of TPN over 24 hours (no wonder he is not hungry). Dr. Koerper said she would start reducing his TPN some more tomorrow.

They tried to reduce his dilaudid (pain medication) from .02 to .01 and the machine wouldn’t allow them to go so low so they just turned it off. His steroid level was reduced, his respiratory therapy has ended, and they have written his lasez treatment for every eight hours.

Dr. Koerper said Robert’s high bilirubin would not be a reason to keep him in the hospital; it could stay high for a long time. Eating is key to his being able to go home. They could send him home on TPN but they don’t like to. Can you believe we are talking about the “H” word (going home)? It is hard to believe that we have spent five out of the last ten months living in UCSF.

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