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.


Tuesday, February 16, 2010

Feb 16 10:30 am

Claire can be completely normal, happy, and lively one hour and then miserable, breathing fast, and uncomfortable the next! And we still can't figure out why?!?

Her night started out great last night. She was happy and feeling great before bed and then since about 1:30 am she's been moaning and miserable. She did get another fever last night and didn't sleep well at all. She was supposed to have her liver biopsy this morning, but because how how terrible she's been feeling this morning, they postponed it till tomorrow. She just wasn't stable enough for the anesthesia and the biopsy wasn't urgent either. She fell asleep again just now and hopefully will feel at least a little better when she wakes. But something is still going on...and we're not entirely sure what it is yet. The did a chest x-ray this morning and will also do an ultrasound of her bladder. She hasn't urinated since 7:30 am. Crazy. They are also going to draw more blood cultures.

3 comments:

Ryan & Keri said...

Natalie, so sorry that you had an icky birthday. I hope they can get to the bottom of this. How are you handling all of this? Lots of prayers for your family. I did love reading about Claire telling everyone to raise their hands that wanted to play babies. Even when she's not feeling well, she's sweet.

Megan said...

This is very very strange!

~adelle said...

SO WEIRD! I want them to figure it out. Pronto. I still think about you all often. I hope that little girl can feel better soon. Crazy stuff. Keep on doing what you do so well....being positive and taking care of your family!