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Old Mon Dec 21, 2009, 01:34 AM
Jen B Jen B is offline
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Join Date: Jun 2009
Location: Glendale California
Posts: 42
Hey Nicole,
Can't tell you how excited I get to see you have posted.

Ethan's counts are still great.
Platelets 287
WBC: 8.9
ANC: 6.8

We had a 4 day stint on prednisone for his asthma and that helped a ton.

Last week tested negative for BK, but retesting again tomorrow as his bleeding hasn't gotten any better. In fact he has a bit more pain and we are seeing clots now. At the end of his urination, the blood is darker and more concentrated...very disconcerting. I am so worried.

Also he has been having diarrhea since Friday night. They have been testing since Saturday for C-Diff. So far 2 negatives. I really think it is more due to the fact that on the Dec. 9th they told me that Ethan could have cheese. We started out slowly 1 meal then 2. I maintained the lactaid. His stools seemed fine. By the 3rd day I was feeding him cheese whenever he wanted - almost 3 meals a day. I figured it was fine and the nutritionist said when I told her the only thing he seemed to want was Cheese pizza...she said, "good calories". So for over a week he as been eating cheese. He was bloated by the end and when the diarrhea started, I took him off cheese.
He has these nasty burps - really smell horrible - worse than his stools. I will talk to the doctor tomorrow again.

I am so homesick. Today is day +40. We have been here 50 days. Miss my older son an my husband. But glad we are here to deal with these things too.

Thanks also for the encouragement on the red cell transfusions. We found out that his CMV isn't Gancyclovere resistant - good news. He is now on maintenance. I am hoping that when that is over, his red count will go up.

Thanks for your post!
__________________
Mother of Ethan, diagnosed with SAA at age 3-1/2 Dec. 2008; Treated with ATG(h) Dec 2008 and ongoing Cyclosporine. MUD BMT 11/10/2009, 10/10 match
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