Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: April 24, 2002

BMT + 22

Robert’s liver/kidney function numbers trended down and one up. His GGT went from 993 to 696; his AST and ALT were both in the normal range; the bad news being that his bilirubin went from 7.1 to 9.0. The bilirubin had been stable for two days and then moved upwards. The other bad news is that Robert still has a lot of diarrhea with blood in his stools. The good news is he is still able to urinate (he is going to read all these reports when he is a teenager and have a fit that I added all his bodily functions into this diary). The bad news is he spiked a fever around 1:00 a.m. and went as high as 39.4 (the cooling pad went back under him).

When Dr. Menzer came by, Robert looked pretty good; the same thing happened when Dr. Cowan came by. In fact, with Dr. Cowan here he (Robert that is, not Dr. Cowan) asked for his little dogs and doghouse that Aunt Michelle sent him. He even said “Good by, Doctor” when Doctor Cowan left. Both doctors felt his skin rash, which is probably from GvHd, was looking better. They both thought Robert was doing well but that it would be a very slow road to recovery. I said we didn’t mind slow, sometimes fast can come with mistakes and that we could be patient as long as we are using the word, “recovery”.

G’Ma was here today and I think Robert liked seeing her.

The other bad news is when they took Robert’s blood for counts this afternoon, his WBC had gone down to 2.1, RBC down to 2.81, hemoglobin was down to 8.8, hematocrit was down to 25.1 and platelets were down to 36K. Robert ended up getting platelets and red blood before his TPA. Cara was here to take care of him and I think he liked that. They didn’t seem very concerned with the lower counts; he is losing blood in his stools and this could be affecting the red blood counts.

Counts