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, October 5, 2009

Oct 5 p.m.

Well, the good news is that there's not a lot to update on! We're happy when things are quiet around here. Her vitals have been great all night and they've been able to pull at least a little bit of fluid. 10-30 ml an hour is about what been able to get off. Slowly but surely it will come.

The only major thing that happened tonight was changing one of the lines that was in her right leg. It was causing her leg to swell and not get very much circulation, so they took that one out and have placed another one in on her neck. Not the most comfortable place to put a line, but you take what you can get on a little one. Everything has gone smoothly with that transition.

Benson went over to a friends house this afternoon. He was about ready to POP with ENERGY and needed to get some of that OUT of his system!! So he happily went! Jared will stay the night here again and I'll try to get some rest at home, as my cold doesn't seem to be getting much better.

They're really hoping things progress well tonight with a slow but steady fluid pull. Definitely one of the better days we've had.

It's interesting how even though we're with her all the time at the hospital, we still really miss her.

4 comments:

Earl said...

Glad to hear things are a little quieter today. Jared, take of yourself and Natalie I hope you get a good's night sleep at home.

Take care guys.
Earl

Megan Hawks said...

So glad to hear you've had a better day! We are so glad to be able to read all about it instead of having to harrass you with phone calls! What an awesome idea. We are thinking of you constantly and praying for all the best :) We sent that Buzz Lightyear costume for Benson with Diana, It's been pretty loved! Love you guys

Jada Taylor Rhodes said...

I heard about Claire and Benson through Alisha Moss's blog. Claire is in our thoughts and prayers. My heart goes out to your family.

R said...

Hi There
I don't think we've officially met, but I moved into your ward a few months ago and now play the piano in primary. I've heard of your situation through the ward as well and found your blog.
I just wanted you to know that our prayers and thoughts are with you.
I'm also a nurse and have worked with very sick kids. But I could never imagine having it be my own child. You definitely have some angels with you.
I'm helping organize a "party" on the 3rd floor in November for the kids at St. Mary's and their siblings through the Mayo spouse association. We'll have a magician and everthing. Hopefully you won't still be there, but know that we're thinking and praying for you and your beautiful children and hope each day brings you more sunshine and strength.
~Rachel Freeman and fam
rachel.o.freeman@gmail.com