Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: March 29, 2002
Robert started ATG today and has not been tolerating it well. His blood pressure shot up to 145/125 even though he was getting ATG over twice the amount of time. He had problems with ATG last time. Last time it was rabbit ATG and this time it is horse (my mom thought horse might be easier on Robert because he loves horses so much). Robert’s heart rate went as high as 170. They have now cut the dose in half, doubled the time again and gave him naphetamine. His blood pressure is now around 116/66. His temperature rose to 39 degrees so they decided to stop the ATG for an hour and a half. Mark is with Robert for the weekend while I am with the other kids. We are in a waiting game right now and watching Robert to see how he handles it.
The anesthesiologist said the nicest thing to me yesterday. She said, “This kid sure has a good set of lungs;” This was after the last radiation treatment. I can guarantee you, no one would have said that during the last transplant. His lungs are much better and his breathing is not as fast as it used to be.
Robert’s Pre BMT Meds
