Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: September 16, 2002

BMT + 169

Robert did get to come home today. He has his feeding tube for twelve hours a day, an anti-biotic running 24 hours a day through his IV and his marinol (synthetic marijuana for all of you wondering what Uncle Dan was enjoying yesterday). I just went in to untangle Robert and he reminded me of a large baby lying in a small bowl of spaghetti.

The feeding tube has not been near as bad as I thought (knock on wood). Robert does not pull on it or seem to mind it very much. I thank God often for giving us such a good-natured child. As Bob’s enzyme (Robert’s donor) keeps infiltrating his body, he may not remain so pleasant. I hope Bob does not see this as a negative comment. I have been listening to a Dean Koonz audiotape and my head is full of adjectives. Today, Robert said to me, “No medicines”. I wish I had had a tape recorder with me because he said these two words so clearly; I just wanted to jump for joy or invite all the nurses in to hear it. Unfortunately, he still did get his morning medicines but I did wait a half hour as a reward.

Robert’s line is contaminated again. If it clears up and then happens again, the line will have to be pulled and replaced. Not such good news.