Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: May 18, 2002

BMT + 46

My new motto is, “What a difference a day makes”. Robert had a very tough night last night. They finally were able to get some operating room time about 5 p.m. last night. So they did an endoscopie (to look at the lining of his stomach) while Robert was back on a ventilator, a sigmoid scope to look at his intestines and a lumbar puncture to check his cerebral spinal pressure.

The good news from the lumbar puncture was that the pressure was less than half what it was last time. It was in the high eighteens so they removed some fluid and got it down to the high fourteens. His pressure was in the normal to high range but they thought while they were in there they might as well lower it a little more.

They said his stomach looked good but his intestines looked spongy and abnormal. They would bleed when they were touched. We will have to wait until Monday to get the final results of whether it’s GVHD or not.

Robert seemed comfortable after the surgery until about 2:00 a.m. and then it was clear he was feeling a lot of pain. We tried adivan and then a bolus of dilaudin and then another bolus and then Benedryl (a wonder drug). He finally was comfortable around 5:00 a.m. and then slept until 9:00 a.m. He let Grandma Jody hold him while his bed was changed and then he let me also hold him. He is such a cuddly guy. He then smiled at Somphit and then went back to sleep in a nice clean bed with a sand bag just below his rear end.

I wish I had thought of the sand bag sooner. Sandbags are used to help a child from continuously sliding down in the bed. Since we want Robert’s head inclined in the bed to help his breathing, we also want him not to continue sliding into a slumping position. I am always pulling him up in the bed. For you “Will Smith” philanthropists, you might like to know that Robert’s first and only word in almost a month was uttered yesterday. Will Smith had fallen on the floor and I threw him in the sink to wash him later. Robert looked at me, said “man” and then smiled. He wanted his Will Smith in his hand.

Dr. Lee told me that he had a patient whose bilirubin went to 30 and did not come down to normal for over a year. He said her skin turned green and did not go back to normal for almost three years. My sympathetic brother, Dan said if that happened to Robert at least he wouldn’t get pinched on St. Patrick’s Day (as if we come from a family and had friends that were pinchers).

Counts