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, November 24, 2009

Day 71

Benson's day: We got Claire going on dialysis by 8:20 (yes!) and I took him down to the lab for his blood tests at 8:40. We must not have very good luck with the lab though. There was some confusion with what tests were ordered and when they were to be drawn. We finally got his blood drawn at 10:00 after numerous phone calls for clarification! I'm really getting some good practice on being patient. I was worried about being away from Claire for that long. That's the longest I've been away from her while she's on dialysis. But she did great. Of course she did.

I don't know the results yet of his blood tests. They did a lot of tests. They drew 23 cc of blood! That's A LOT! We also started a 24-hour urine collection. This helps them to know how well the kidneys are getting rid of the oxalate in his body in a 24-hour period. We came home for lunch and I put Claire down for a nap. One of the best things about Jared's job is that he works from home, over the internet. So I put Claire to bed and was able to leave her home sleeping with the monitor in Jared's office while I took Benson back to the hospital for the ultrasound of his kidneys. Benson did really good for the ultrasound. Again, I don't know the results of that yet either, but should get more info on Friday (or before if the Doctor stops by sooner).

Benson's happy to have his big day over.

Thanks to everyone who went to the Benefit in Ogden, Utah last night. I heard it was quite a party, a great success, and tons of fun for all involved! Thanks to those who worked hard to put it together and all who attended too!

1 comment:

Beth said...

Please know that your family is in my prayers as you wait for good news about Benson's tests. We've never met, but that's not the most important thing, is it?

Beth
in Oregon