Robert's Road to Recovery: The Second Transplant

the international society for mannosidosis & related diseases presents:
Robert's Road to Recovery: the second transplant

Kathleen's Diary:
May 23, 2002

BMT + 51

Let's get through the bad news really fast; Robert's GGT went up from 1319
to 1508, the highest it has ever been. I know this sentence sounds familiar
and it is, just worse than yesterday and the day before yesterday. Some of
the other numbers that go along with GGT also got worse; ALT, AST and
Alkaline phosphate.

Now the good news; Robert's platelets were 39k, only down from 32k
yesterday. Robert did get more platelets today. Robert's bilirubin was
down to 19.5. That may not sound like much of a drop from 20.2 but this is
the lowest his bilirubin has been in eight day.

Robert's respiratory rate has been creeping up from the low to mid thirties
to the low forties now and his heart rate is also a little up. Robert is now on
full strength Pediasure; the first six hours he has been receiving about one
teaspoon and hour. Every six hours, it will be increased a half teaspoon and
the TPN will be lowered an equivalent amount.

If all goes well, he will be off TPN at the end of three days.

We had company today; Somphit stayed with Robert while I had lunch with a
very good friend of mine, Kai-ye Fung. They are going to hold stable on Robert's
diluadid today and then turn it down another .01 to .03 tomorrow.

This morning I woke up to a big poopy diaper. I never thought I would be so
glad to change one of those things again. The good news was that there was
no blood in it. I have become less excited about the third poopy diaper (I
may just be happy versus excited).

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