Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: March 28, 2002
BMT-4
Robert finished his TBI or total body irradiation today. He put on quite a show, entertaining everyone at his last appointment. He needed more medication to go to sleep because he was so wound up. He likes having so many people paying attention to only him.
When we came back to the room he was very upset and wanted to stay under the coverage. He was not interested in eating or visiting. His blood pressure dropped quite low (80/30) and I was becoming concerned. The resident came into check him out. She asked to turn on the lights to check his mouth for sores. That kind of woke him up and his blood pressure came back up. Now he seems uninterested in food or sleep.
While talking to Chris Halaburka tonight, the kitchen people took my dinner away. The phone is in the room where we are not supposed to eat until Robert is almost ready to return home.
I have been pushing the physical therapist supervisor to make Robert splints to wear at night to keep his feet at a 90-degree angle to his leg. This will keep his heal cords loose and make it easier for Robert to walk when he returns home. We were trying to get them done just after he returned to the room after radiation in order to take advantage of his sleepiness. This did not work very well and he was quite crabby. He was not very cooperative and we found once we finished that he had two right feet braces. Fortunately, the material can be heated and molded again.
Tomorrow, we start two chemo medicines. I don’t think Robert will like this.
