Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: November 22, 2001
Robert’s Update BMT + 122
Dear Friends and Family, Robert did get to come home with Uncle Dan last night, about 11 p.m. For a few hours it was a question of whether I would go spend the night in the hospital with Robert or Uncle Dan could bring Robert home to be with me. Last night, Robert’s blood pressure shot up to 176/141, of course it was just after he figured out that he was going to get a dressing change. His blood pressure did drift down throughout the evening, coming down to 112/90 so Dr. Horn let him go home with his blood pressure medicine and a card from the nurses but without his magnesium tablets. Uncle Dan is on his way back from UCSF Thanksgiving Day having gone to San Francisco to play a little family football (it has been going on since my Dad was a kid) and pick up Robert’s magnesium tablets (they are not easy to find at Long’s on a regular day, let alone a holiday).
We have decided to take Robert to be with the rest of his family, after all there are three doctors and a nurse practitioner in the house there vs. me here. Dr. Horn didn’t feel strongly either way. She said it was only important that we take Robert to the closest emergency room if he runs a fever. The central line site is oozing a little but Dr. Horn said that is pretty common, that he may have some discharge for another 5-8 days. She feels that the incision was too large and that that is part of the problem. I think Robert and I will enjoy being with the rest of the family at the beach. Robert is pretty excited about the mail these days. Last week Aunt Jo sent him a Pooh book (we have just watched a Pooh video for the third time, not that I am complaining. Anything is better than the black stallion one more time (Judy)) and today Robert got a purple bear from his good friend, Jenny (#7 bone marrow transplant previously with alpha mannosidosis). I could see this bear and Robert were in love at first site. He is not going to put the new bear down for weeks. Thank you, Jenny.
We have so much to be thankful for at Thanksgiving this year. I count my blessings so often in these updates you probably can each recite them from memory. So you guessed it, I am not going to repeat them again, I think instead I will go watch a little Pooh with Robert before we head to the beach.
