Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: July 18 2001

Robert BMT-1

Robert continues to do much better with the R-ATG running at half the dose for twice as long. He does seem to be huffing and puffing (true medical terms) more and he was slightly crackly on his lower right side. We had him sit up in his Haman School chair for about an hour and a half. Actually he seemed to be working harder while sitting up. His stats looked the best when he was laying on his right side. I asked for another x-ray just to rule out any infection in his lungs. The x-ray did come back negative but they noticed in the x-ray that the central line had moved. It had moved enough that it would not be useful for sending nutrients into Robert next week. The central line needs to be replaced. The doctors talked about doing the surgery tomorrow before the actual bone marrow transplant which will be some time around 8:00 p.m. We actually hope they don’t do it tomorrow. It would be better if it could be done Friday so that it would be after the transplant. As of 11:00 p.m. tonight we don’t know yet what the plan is.

For those of you with a little time on your hands you can read “my bagel” story. To begin with it has not been as easy to get Robert to eat for the last two days so when he wants something to eat, I jump. This morning he yelled “Bagel”. Of course, it wasn’t on his breakfast menu and we had to order it special a little before 10:00 a.m. At 11:30 a.m., we had still not received his bagels, so of course I run down the six flights of stairs, storm into the kitchen requesting Robert’s two bagels. I remind them Robert is a BMT patient so that they will cover the bagels correctly. I take the tray and climb the six flights of stairs (no way could I take the elevator at the time; it is full of germs and I would have arrived at dinner time after visiting every floor in the hospital).

I arrive in Robert’s room only slightly breathless (well maybe more than slightly) and the nurse and I discuss where the bagels came from. I am pretty sure the kitchen helper went and got the two bagels from the cafeteria, an absolute no, no. I go back down all six flights and ask for new bagels to be taken straight out of the bag and individually wrapped. I climb my six flights of stairs and bring to Robert his now properly prepared bagel. Now you non-hospital buffs may not realized that every time I enter Robert’s room I must scrub my hands completely.

While Robert is eating the first bagel, the cafeteria aid throws away the second one. To add insult to injury the nutritionist later in the day tells me just to write on Robert’s menu how many bagels I need and how many little containers of cream cheese I need. I can keep an extra individually wrapped bagel and cream cheese in the small refrigerator that I just found out about. I think hospitals like to make everything a mini treasure hunt, the bathroom, the shower, the refrigerator, the microwave and the quickest elevator.