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.


Friday, March 11, 2011

home again

We made it home! Claire did about 10 laps around the house in excitement and I threw myself on the couch! I guess that tells you that she's feeling much better (and that I'm a bit tired :) So yes, we're home. But she's actually back at the hospital with Jared getting her nightly dose of antibiotics. She was a bit confused why she had to go back so soon, but at least she'll get to sleep in her own bed tonight. We all will!

8 am and 7 pm every day for the next 11 days we'll take her back for the IV antibiotic and then at the end of that treatment, they'll do a final blood culture to make sure the bacteria is all the way gone.

They aren't 100% sure how she got this bacteria, but they think that because of how they connected the liver and the bile duct during the transplant, the "bug" traveled through her gut, into the liver, and then circulated throughout her blood from there. Because she is immune compromised, her body couldn't fight it off. There's a long medical explanation involved, but that's the hypothesis of what caused all this trouble. I guess it's just one of those possible-transplant-side-effects that comes with the territory.

So besides running around the house, what was the first thing she wanted to do when we got home? Blood work. For Annie. She has a renewed spark for doing blood work because she got a whole bunch of new and different supplies to add to her collection! Oh Annie. How loved and needed you are by Claire.

So happy to be home. Even happier to have a happy, healthy, active Claire!

4 comments:

Megan said...

I have a feeling that one will be working in the medical field one day. Congrats on getting this thing under control.

~adelle said...

That is just great! Glad you all ALL home. There is no place like home. That is for sure.

Hoffer said...

Glad you are home and well.

Grandpa Terry and Diana said...

So happy to read your blog this morning.

We are grateful for the doctors, nurses, and others that work so hard to get Claire home again.

Glad you are home. Give them all a love for us.