Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: August 9, 2001

Robert’s Update BMT + 21

Robert had a great day and his parents had an excellent day. Dr. Horn had come by yesterday while Uncle Dan was watching Robert and said Robert might go home next week. Dr. Horn has a strong accent so I thought Dan had misunderstood her. But Donna, the nurse coordinator came by this morning and said the same thing. She said we would need to start training to prepare for home. I told her we were worried about taking Robert home and were thinking about continuing isolation at home, maybe renting a small place near home. Donna said they don’t recommend this and in fact feel the patient recovers quicker if they are in their home and happy with their family.

Robert’s white blood count went up to 600 today. Monday it was 200 and Tuesday and Wednesday it was 300. They may wait until next week to do the blood test to figure out whose blood is coming back. Robert ate very well this morning, three scrambled eggs. I think it fill him enough to last the whole day. His rear end is very sore from so much diarrhea.

Robert went to bed late last night; I think he fell asleep around 1:00 a.m. At 7:00 a.m. I went to check on Robert and his bed was pretty wet. I found one of the lines open and leaking. I remembered the days when Robert had I.V.’s that leaked and they would fill with blood. I hit the emergency red button. I thought it just brought the nurse quickly. Well, eight people piled into the room in less than 6 seconds. I felt pretty stupid and irritated that no one had explained the red button to me.

Robert is now writing in his Tigger writing book watching Sand Lot Kids. I think he watched Black Stallion at least seven times today. What a great movie.

G’ma stayed with Robert most of the day. I had a meeting with Jim Cunneen about the hospital today. It went very well.

Tomorrow we have to plan our spring-cleaning to prepare for Robert’s return home.