Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: August 10, 2002

BMT + 132

It has been hard to write. My portable computer has been in the shop for a few weeks and I needed to take the time to make sure the e-mail distribution list matched.

Robert has been attached to two IV’s lately. I took him into the hospital last Thursday because he was very lethargic. I was worried about an infected line. Once the intern went through the normal questions he figured out it was the blood pressure patch causing the problems. As soon as we removed it, the problem went away. We were released on Friday and headed down to the beach, arriving about three in the morning.

The next day, one of the doctors called to say Robert had a slight contamination in his line and we should head up. He was put on an antibiotic and stayed for four days. Upon returning home, we had to start up the ten hour hydration IV and run the antibiotic over 24 hours. If Robert wanted to walk we have to carry both his bags in one hand.

Robert misses the other kids who are at their Aunt Mary’s wedding. He and I are kind of lonely.

We received one of our insurance statements today and it said they would only pay half of all costs for the second bone marrow transplant. Of course it is a weekend and there is no one to answer the question.