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.

Wednesday, September 23, 2009

Day 9

Today was a long day. Claire's catheter didn't work well at first. One of the ports was plugged/clotted/just didn't push or pull right. Instead of the nurse just fixing it right then, since he knew it wasn't 'feeling' right, he tried to start dialysis. That created more problems than it was worth. He ended up not even getting through a full cycle and simply gave her back whatever blood had been pulled from her. We put some TPA (medicine) in her ports and let it dwell there for 1 hour. They set up a new machine for her. I took Claire for another walk around the hospital and she thought we were done and good to go. She was not very excited (nor was I) when we walked back into dialysis an hour later and had to start all over again. The medicine worked and the catheter worked well throughout the rest of the time. The only 'problem' was that we were there for 6 hours. Way to long for both of us.

We were glad to finally get home.

Good night princess

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1 comment:

Philip, Melissa, & Summer said...

Wow, you guys must be exhausted. Way to hang in there.

September 23, 2009 at 9:30 PM

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