Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: April 6, 2002
BMT + 4
Things are getting rougher for Robert. He points to his mouth and tries to tell Mark it hurts. He drools in his sleep. They have put him on a low dose of painkillers continuously dripping through his central line. Mark has been with him since I left Thursday night and he says Robert has been very tired and quiet. I think the nurses miss the noisy Robert. He has been the talk of the floor for a while. Even patients in other rooms can hear Robert yelling, “Look, Dad, look.”
The other four children are all ready to go stay with Grandma Jody and Grandfather Fred. I took Nick and Matt to get snow clothes. Matt liked his snowsuit, gloves, helmet, boots, and goggles so much he wore them home from the store and informed us that he was wearing his new outfit on the plane.
