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, March 7, 2011

today

I've said this phrase before and I'm remembering how true it is. Sometime it's OKAY for one day to be just like the last. That means everything's status-quo...not changed...normal. Unfortunately, today wasn't not like the day before.

Claire woke up with a fever. After chatting with her nurse, she kind of left it up to me to decide if we should take her into the Emergency Dept. or just have her see a doctor in the clinic later that afternoon. After checking her temp again and seeing it even higher (39.0) I knew we needed to take her in. She was miserable. So we went through the whole emergency dept. procedures and they took blood cultures, urine cultures, other labs, and a chest x-ray. They want to keep her on an IV antibiotic until they know what's going on. She'll receive that every 8 hrs. It takes 24 hrs to see if anything "grows" in the cultures. Until we know what's going on, Claire will stay at the hospital.

Jared's sleeping there tonight with Claire. Mabel and I will switch him early in the morning so he can be home to work. We'll see what tomorrow brings. Hopefully an answer!

She did sound quite chipper when I chatted with her on the phone this evening. A lot more chipper than Jared....although she's had two strong antibiotics, 2 naps, and her tylenol dose is at it's peak....so she's feeling A-OKAY as of the moment! Hopefully they BOTH get some good sleep tonight!

2 comments:

Terry and Diana said...

Wow. I hope things work out as well as they have in the past for Claire.

Our prayers are with you.

~adelle said...

KEEEEEEP us posted. Sorry Nat. Life is just crazy sometimes! I send you all some utah love!