Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

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).