Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: March 31, 2002
BMT – 1
Robert had h-ATG on Friday and because of the seizure he was switched to rabbit ATG. He had rabbit ATG last time and the concern with using it again is that he has built up immunities to it. But anything is preferable to seizure. With h-ATG, Roberts’s respiration and pulse seem to go through the roof. With rabbit, his oxygen level goes down. For the last two days he has been given anti-seizure medicine and Motrin to keep the fever down.
Last night was pretty tough on Robert but not as bad as the night before. His temperature rose again but only to 38. He had terrible tremors with the higher temperature. He could not eat or drink anything in case he was to have a seizure. Robert kept asking for “soda, soda” and wondering why we wouldn’t give it to him. He then tried “soda please” and he still couldn’t get his soda. He then tried “May I please have soda?’ He thought his politeness might help to get him what he wanted. It was very sad not to give in.
Tonight went better although Robert need oxygen tonight.
Robert received platelets yesterday and today.
Robert’s Pre BMT Meds
