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, April 5, 2010

Bye bye catheter

Claire's dialysis catheter is going to come out tomorrow at 2:00 pm and they're not going to put her to sleep for it. Getting the cuff disconnected would be the most difficult/painful part of taking it out, and since that is already out, it should just be a quick pull. Theoretically speaking. There are two stitches they'll have to undo and as you can tell from the picture, the area around the site is tender.....so I'm sure it won't be "fun" by any means; but nice to have it out and nice to not have to go through the big ordeal of putting her to sleep for a simple thing like this. It has served it's purpose well but glad to see it go! Good thing she's a tough girl. She's going to need it tomorrow.

They want to make sure the infection is completely healed before we think about doing anything else. There is a good chance she will have a port-a-cath put in in another few weeks to be used for blood work, but it will be installed beneath the skin. Nothing will be hanging out...which also means she will finally be able to take a REAL bath and SWIM! Perfect timing with summer just around the corner!

A collection of the stuff Benson and Claire smuggled at the doctor's office today. Two of the stickers and the bunny rabbits were given to Claire when she did blood work this morning. She's always sure to get something for brother when she's gettin' the goods...and so the blue bunny made it home with us too. Everything else was from the kidney doctor's office!! Our nurse said our kids have VIP status. Not everyone gets that loaded with goods. I think I'm ready to be demoted!!

2 comments:

Melissa said...

I was clicking away through blogs today and ran across yours.

I wish you the best with your beautiful babies. I also noticed you were LDS, as am I. It is so great knowing we have someone to turn to for strength and love.

I'll be checking back. Thanks for sharing your story.

Ryan & Keri said...

We hope things go well today with the catheter removal. We'll be thinking of you guys and praying for you. And we LOVE the family picture below. We sure miss you. Glad you had such a wonderful Easter. We did too. I think this is my favorite holiday next to Christmas.