Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: July 27 2001

Robert BMT + 7

Robert had a platelet transfusion again today. Yesterday’s transfusion got a little confused and ended up split into two portions. It did not have the effect they had hoped. They expected to increase his platelet count to 40K but it only rose from 13K to 19K. Anytime he gets near 20K or lower they will give him a transfusion. Robert had some trouble with his 02 levels last night. He was supposed to be on � a liter but it turns out he was probably not on 02 last night. The connecting line was loose and the respiratory therapist found it on the floor this morning. With all the alarms in the room you think they could find away to have one on the 02 to make sure it is getting to the child.

Right now it is almost 11:00 p.m. and Robert is playing with his toes and giggling. I wonder if he is playing with his foot because he is watching the dance scene in Angels in the Infield. I really feel sorry for any child that hasn’t seen this movie and also sorry for any parent who has seen it as many times as I have. Any second he is going to say, “Do it again, Mom”.

I got to take my shower today without any furniture or poles in the bathroom. I had to take a toy car in to hang my clothes over so they wouldn’t be on the floor.

Robert’s saturation levels are pretty good. His 02 is 98, his respiration is 25 and his heart rate is 135. His albuterol treatment was at 7:30 p.m. and he is kind of wound up.

His hair is starting to fall out and it is everywhere. I talked to one of the aids about shaving it off. I then talked to a parent who is a hairdresser. He said not to take a chance that Robert might get cut, that they always loose more the first time.

Speaking of parents, the nurses all seem to do something with the kids around 3:30 a.m. While I went to find a rest room last night at that time there were parents out in the hall socializing.