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, August 6, 2012

tubeLESS

Last night before bed Claire asked, "how many more hours before I get my tube out?!" It's like an early Christmas here for Claire! She was so excited this morning...not so much excited thinking about going to sleep with the mask again...but then very VERY happy when it was all said and done this afternoon!

Things went great today. They got her in first thing and although she hates the thoughts of the sleep mask, she is becoming an ol' pro at it. She squirmed and groaned on the journey to the room, but as soon as she got in and was comfortable in my arms on the bed, she immediately settled down, closed her eyes, and waited to drift off to sleep. I love it. It makes it so much easier for both of us....for ALL involved.

Anyhow, they put some contrast/dye through her tube to make sure it was still dilated and it looked great. They called her liver doctor to confirm one more time that this is what he wanted to have happen and got the go-ahead from him. And then it was pulled! As Claire put it, "there's just a big bandage there...hopefully the tube isn't hiding underneath the band aid!" Pretty sure it's not!

She had a rough wake up from the anesthesia, but once all that wore off, she had a great rest-of-the-day! It was good to get home early, have a relaxing day with the kids, and NOT have to flush her tube before bed tonight! I teased her and said, "let me got get your flush for your tube." She got the biggest grin on her face and said "MOM my tube's GONE REMEMBER!! ha ha ha ha ha ha ha :)

So far so good. Now we'll just watch her and watch for any signs of trouble: fever, yellow skin/eyes, itching, general feeling of yuckiness.

Looking forward to a great week! Only 4 more weeks till school starts...gotta enjoy the last of these summer days!!

2 comments:

Grandpa Terry and Diana said...

Congratulations, Claire, you are a trooper. We are very proud of you and wish you the very best.

The doctors, nurses, and the Mayo Clinic are the best. You too are the best little girl in the whole world.

~adelle said...

Well that is so wonderful! Wahoo. See ya later mr tube.