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.


Sunday, March 13, 2011

back again

Well, we were all home together...and now we're not.

Claire had an allergic reaction to the IV antibiotic we started giving her. After we saw the itchy /redness coming on Friday and Saturday, we started giving her benadryl. That seemed to help and we were hoping it would allow us to keep giving the medicine, but her body let us know that it didn't agree!!

After the benadryl wore off late Saturday night, she was miserable and was hardly able to sleep. I took her in this morning and she was so bad (itchy and red all over) by the time we got there that the doctor came to see her and said she needed to be admitted. She was so uncomfortable...and telling a 3 yr old NOT to itch when it really does itch-BAD-everywhere just doesn't work. She was pretty much drawing blood over parts of her body from itching so hard. And you can't just pin her down and completely constrain her either!! Poor girl. It was rough. I felt so bad for her.

But thank goodness for medicine. They got some good meds and fluids in her quick and the redness is completely resolved and itchiness mostly gone. So now they just need to figure out what medicine we can use, cuz that one is out of the question! We're hoping they can get it figured out tomorrow and she'll be able to come home tomorrow. But for now, at least we're used to the hospital routine. Jared's a trooper to stay the night there and Mabel and I will take over in the morning. Let's hope this is the last of the hospital posts for a while!!

2 comments:

Tasha said...

Good luck.

Tricia said...

So sorry you are back in the hospital again. We'll be praying that you can all be home together again soon!