Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: August 16, 2001

Robert’s Update BMT + 28

Well, the original plan was to go home today. Yesterday, they finally did the head and back MRI the doctors had wanted to complete before the BMT as a baseline MRI. Somehow we just didn’t get to it until the day before we were to leave. They were able to move the MRI from the afternoon to early in the morning. Robert was under anesthesia from 9:00 a.m. until 11:30 a.m. He came out of it well as he usually does.

Because they are anxious to get Robert back to isolation, his post op time was back in his room. He was actually hungry when he returned. He didn’t want anything to drink only a yogurt. I was so please he wanted to eat that I allowed him to eat very quickly. About three hours after anesthesia Robert started shaking and Mom and I could tell his temperature had risen. I beeped the nurse but she did not come right away so I went and got her. Robert’s temperature was 38.8 with 37 being normal. Robert’s temperature had risen about two degrees in less than half an hour.

I was very impressed with the team at U.C.S.F. About three nurses showed up and they worked extremely well together. The two additional nurses kept asking our nurse how they could help. There were also two residences and the BMT doctor there. The respiratory therapist was also called and Robert was given a treatment right away. Robert’s airways sounded terrible. Blood was taken to culture it and see if there was any kind of infection. Antibiotics were started.

Today, Robert was great. His temperature was close to normal; he ate yogurt, chicken mcnuggets and a taco today. He also didn’t have much diarrhea. The blood culture was negative.

So we are there at least until Monday when the blood culture will come back. If it is still negative and Robert’s diarrhea is under control we will probably go home then. If the blood shows anything we will have to stay an additional week for a course of antibiotics.

I was kind of sad because the two boys who started about the same time as Robert went home and Robert didn’t but I am glad we were still in the hospital when this happened.