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| Kathleen's Diary: September 16, 2002 |
the international society for
mannosidosis & related diseases presents:
Robert's Road to Recovery: the second
transplant
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| 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.
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