Benson and Claire were born with a rare genetic disease in which their liver produces too much oxalate--called primary hyperoxaluria. Claire's condition has progressed much faster than Benson's. She was on dialysis since she was 3 months old and for much of that time, did dialysis 3 hours a day, 6 days a week. She receive a much needed kidney / liver transplant on December 18, 2009. It is expected Benson will eventually need similar transplants.

Monday, October 31, 2011

today

Things didn't go exactly as hoped today. Trying to "stretch" the bile duct open didn't work. It wouldn't budge. So they put a tube in the bile duct to temporarilary keep it open and wider. The tube drains out into a drain bag that comes out of her side. Claire and I are staying the night here at the hospital. They're going to teach us how to take care of the drain tube/bag until a peremant fix is decided upon. Should be able to go home tomorrow.

More tomorrow....I've got a needy, not so comfortable little girl that needs assistance!

Stinky way for a child to spend Halloween. I think we've got 3 of the major holidays covered in the hospital...Thanksgiving '07 Christmas '09 and now Halloween '11....I never really liked odd numbers that much anyway!!
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1 comment:

Grandpa Terry and Diana said...

Hang in there. Next year is an even numbered year and the forcast is for good news.

We will keep Claire and all of you in our prayers.

October 31, 2011 at 8:02 PM

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