Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: August 19, 2001
Robert’s Update BMT + 31
I should start with the bad news, Robert had another fever starting about 7:00 tonight. It rose a lot slower than last Wednesday but to exactly the same level, 38.8. They did a blood draw and culture which means he will start a new course of antibiotics for the next 48 hours. I think that means we will be here at least until Wednesday. I would rather have the fevers here than at home. I am guessing we may have to stay until they can figure out if this fever is related to the other fever or not. My father-in-law, Fred believes that it could be an infection that is now showing up because his White Blood Count is coming back and it is fighting any kind of infection that may have been sitting there dormant.
The good news is that Parris’ father, Brian stopped by and said Parris (our previous neighbor) is doing well at home. Brian has started sending me his e-mail updates and this is nice because Parris is a week or two ahead of Robert. I can read his e-mail updates and get an idea of what we can expect when we get home. Brian had also checked on another one of our neighbors, Chatra. Chatra was having lungs problems and was moved to the ICU a few days ago. Brian said she is doing better and will move back to BMT soon. The other good news is Robert’s appetite is coming back. He had five pieces of bacon today. I am glad Kathy Shepard told me her son craved salts and spices at about this point in her son’s BMT. I can see the same thing is happening to Robert.
The other bad news is Robert’s blood pressure is still high and he has to take medications and wear a patch for it. Dr. Cowan believes that the cyclosporine is the culprit.
The other good news is that Robert’s story is now on the alpha mannosidosis website. Just go to and look under “Robert’s Road to Recovery“. Thank you Paul for doing that. The nurses here are pretty excited about it. Also thanks for editing out all the nasty things I said about all our friends and family (just kidding).
One more piece of good news, Mark told me there is away I can just paste this document into e-mail for you novices or old timers that can’t open documents on your e-mail.
