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.


Thursday, October 1, 2009

Day 17

Today we got home at 10:45 a.m. That's never a good thing. Claire's catheter didn't work today. She didn't get dialysis. There is a clot in the red port and they can't push or pull anything from it. They were going to have us go to the radiology dept. tomorrow morning to see if they could un-clot the catheter without replacing the entire thing. Long story short, the Doctor called me tonight and said she's been talking with radiology, surgery, nurses and other doctors and they've decided it's going to be better to pull the catheter and put a new one in, most likely on the other side of her abdomen. So surgery is "scheduled" for tomorrow...but not really scheduled at all. Of course they're booked, but will squeeze us in "sometime" tomorrow. That means a long day in the surgery waiting room, with a little one who can't have anything to eat or dink after midnight tonight. Not fun having a hungry child who doesn't quite understand why you simply won't feed them! Since she missed dialysis today, Claire will still do her 3-hour dialysis tomorrow after the surgery with the new catheter. She will also have to go in on Sunday to make up for missing today. It's going to be a long day. Hard for the princess. And I guess that means hard for all of us. Our friend will take Benson to preschool in the morning and Jared will pick him up when it's over and take him to another friend's house to play for the afternoon. Thank goodness for wonderful friends who are willing to step right up and help out anytime with anything!!

One positive note: I decided to make good use of my early day off and made homemade rolls and beef vegetable soup. Dinner was scrumptious!

3 comments:

John & Shauna said...

Sounds like the dialysis doctors need some training from the Denver doctors:) I'm so happy for you guys that the "friends" are stepping in to help take care of your family. Good luck with the surgery. We will be waiting to hear how it all goes

Aubrie said...

I hope the surgery went well! What a frustrating day. Whenever you need help, you know we are all here for you guys. We adore Benson and Claire!

Nathan & Michelle Watabe said...

Sorry to hear about the complications. That's a bummer. Hopefully the surgery went well and the weekend is bearable. It is wonderful to hear that people have come right to your aid there. You've only been there for a month, right? That's awesome!