Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: April 20, 2002
BMT + 18
Today was another difficult day. Robert continued to have evidence of liver complications (high biliruben – 5.0, and high GGT – 401), and his liver was more. The good news is that another ultrasound of his liver still showed no severe blockage of blood vessels or accumulation of fluid, so the liver disease (VOD) is not severe. The doctors think the next several days will be important to see if the condition remains stable or gets worse. They were a little more optimistic today, but careful not to get our hopes up yet. My father (Dr. Fred Stark) came down from Oregon today to spend the weekend with us, and came to the hospital this evening.
Robert also continued to have cycles of fever and high blood pressure. He was tired and slept most of the day. However, his nausea seemed less today. The fever was worst at 11:00PM, and his lungs also became involved, and he was not able to maintain his O2 saturation without oxygen flowing directly into his face. We tried to use a nasal canula (a small tube around his face that flows oxygen into his nose) which worked last year, but he pulled it off repeatedly. Eventually, my father and I took turns sitting next to Robert and making sure the oxygen tube was near his face. (I’m writing this during my shift). Even though it is concerning that he needs this support, the fact that a small amount of O2 “blow-by” keeps his saturation up is good news, because it means his lungs are still in pretty good shape. His fever is down now, and he is sleeping comfortably.
We still don’t know if his fever is the result of an infection, the graft-vs.-host disease, or even a drug reaction. The doctors therefore have to do a balancing act, treating all possible sources of the problem and also side effects of the treatments. They also have to support the liver by managing fluid levels. We are very thankful that we have such experienced and expert doctors taking care of Robert, although Kathleen and I sometimes still get exasperated with them.
We’d like to thank all of you for your continued prayers, support, and everything you’ve done to help. This experience has also taught us how lucky we are to have such wonderful family and friends.
Thank you,
Kathleen and Mark
