Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: May 16, 2002

BMT + 44

For the tetchy group, you are going to have to endure my update because Mark did not write one today. I have been told mine are warmer and fuzzier than Mark’s updates but they lack the medical depth of Mark’s (What can I say, Mark’s family is full of all those medical people).

Last night was the scariest night for me so far. I didn’t arrive until 11 p.m. and Robert looked like he was in pain, having psychotic nightmares and a flare up of his clonis. He has had clonis (shaking of both legs and feet) since he was a baby but it went away when he was three and recently came back because of all the stress his body is going through. It was hard to know if we should turn up the diluaded (pain medication) or the oxygen to help his respiratory rate or give him benedryl to calm him down. Robert would fall asleep for about 10 minutes and then wake with terrible nightmares. His foot would wake him up with all the shaking. So we started with benedryl and that only helped a little. We than gave him a small bulliss of diluaded. When that didn’t help we tried adivan and that did the trick. Robert got his first good nights sleep in four days starting at 4 a.m. this morning and continuing through out the day. In ICU, they call sleep deprivation ICU Psychosis.

Last night Robert was so miserable and unhappy that I began to feel the same way. I am so glad Mark had tacked up Father Jim’s sign, “Never Give Up”. It did help.

In a situation like this, you realize how scary the night is and what a difference a day makes. Robert’s liver function numbers were better today than yesterday. I know I have to be cautiously optimistic; Dr. Cowan keeps reminding me that one day of good numbers does not signify a trend.

Robert could have been just plain happy to come back to his home away from home and to all his pals (his nurses) in the bone marrow unit. One of his favorite nurses just had Robert as her patient today. We are getting spoiled.

Tomorrow afternoon, they plan to do the lumbar puncture and the scope of his stomach. There has been some talk of a liver biopsy but the GI doctor that just came on this week thinks it’s too risky until his platelets can stay over 100k. The liver biopsy would tell the doctors if Robert has GVHD or VOD. Since each of these diseases has a different medicine regime, it would be helpful to know if we are treating the right disease.

Last night, was the first fundraiser for the Silicon Valley Children’s Hospital Foundation. For those of you that missed it, you missed one fantastic event. Linda did a fantastic job and I have read many complements for her today. Cara, Robert’s other favorite nurse, was able to get us a couple of baseballs through her husband who works for the Giants and Terry, another of Robert’s favorite nurses, embroidered two items for the auction. Between these two nurses, we raised $900.

Mark would say, “Best regards” and I will say, “We love you all”

Kathleen

Counts