Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: July 9, 2001

Personal Update BMT-10
(Bone Marrow Transplant minus ten as we say in the medical world)

Robert now has his central line. In fact, he has had it a week. Today, we were admitted into the hospital. Robert needed a chest x-ray so they could check the central live. The hospital x-ray waiting room had about 20 people in it. I told the nurse we did not want to take Robert into the room after having kept him isolated for the last month. Thankfully, she sent us over to outpatient x-ray and everything went fine.

Robert was admitted into Room 725. You sure get a bigger room when you insurance spends $250,000 on a bone marrow transplant. The room has five huge windows and you can see out to the bay between the buildings across the street. I can also control the temperature within the room. It also has a nice bathroom although we are not allowed to use it or even eat in the room. We learned how to scrub our hands for a full 2 minutes. Everything that comes into the room has to be wiped down with rubbing alcohol. And every utensil Robert uses for food must be rinsed in distilled water.

Until 8:00 p.m. Robert watched videos and had blood drawn. He wasn’t too unhappy except for the dressing change. It takes two of us to hold him down and a nurse to remove the tape. He has very sensitive skin. Everything was o.k. until Angels in the Infield had about 10 commercials in a row on the copy we had (Robert, can you ask Disney to cut down on their commercials from now on). Actually Robert’s movie and Jungle Book have been lifesavers especially when you can’t move around much.

Just after I left at eight, the fun began. Mark had to give Robert 12 different medicines orally. And Robert’s vitals needed to be checked every fifteen minutes. Robert was so tired videos didn’t help anymore. All he wanted to do is sleep.