Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: July 23 2001
Robert’s BMT + 4
Robert seems to be doing well. His lungs are still sounding crackly and he has been on O2 for about a week now. They gave him lasiz (a diuretic) again last night. The problem with the diuretic is that his diaper needs to be changed every two hours and that means he does not get much sleep in the night. Also his heart rate slowed down during the night, to almost half its usual rate. They decided they should do an EKG today.
Because he was so tired this morning I was worried he would be listless. He didn’t want his breakfast and only ate fruit roll ups. But the physical therapist came by and he got up and sat in his chair for three hours. He played basketball for over an hour. I think he felt much better after being up that much and even ate some chicken mcnuggets (hospital style) before taking a nap.
Robert’s WBC (white blood count) is almost non-existent which is what they would expect at this point. His platelets are 41 when the average is 140-450. They may give him a blood transfusion tomorrow, which is also expected. There has been some kidney damage but it is improving. His RBC (red blood count) is 3.54, which is slightly below normal.
Mark said the woman who administered the EKG on Robert had some trouble getting all the leads on him and the test had to be repeated. Robert really doesn’t enjoy all the leads being put on him. It is the start of a new four-week shift so all the doctors, residents and fellows change. At least Dr. Cowan brought the doctor around to meet us and talk to Mark.
When I returned home I found out that Marie had the flu. She definitely was sick. I know because she was too sick to go see G’ma’s new puppy, a Jack Russell Terrier named, Billie Jean King. Margie came over and watched Marie while I took the other three to see the new puppy. There was a big negotiation in the back seat over who would hold the puppy first. It was decided Allyssa would hold the puppy first and Nick would drive the golf cart down to the duck pond. Matt got whatever was left doing after the older two were finished with their activities.
They all loved seeing G’ma, Billie Jean and the golf cart. They did not tease Marie about the fun they had while she was at home. Although Nick started negotiating with me on the way home; since he wouldn’t see me much this week could someone take only him to a Giants home game? Not much of a conclusion here since I think the negotiating will start again in the morning.
