Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: April 27, 2002

BMT + 25

Robert had fevers most of the day again. He felt a little better during the day. The bilirubin was down slightly today, and so was the GGT. Robert got a CT scan today to see if there was any infected areas or perforations of the bowels. Neither of these was found, but the large intestine was enlarged. The doctors will look at the CT scan tomorrow morning.

I had trouble finishing the update because Robert has had a very difficult night. He was in a lot of pain and needed frequent medication. He also wanted soda, but he is now NPO, so he can’t have anything to eat or drink except a small amount of water on a sponge. He also had fevers and high blood pressure. They want to switch Robert to a new blood pressure medication that is a beta-blocker, so it will slow down his heart rate as well. The challenge is that it is a IV medication, and there are so many medications going into his IV’s now, that we haven’t been able to get the medication started.

Please keep praying for Robert!

Counts