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.

Saturday, November 5, 2011

Saturday

Today was a good day. Only one major medical occurrence. At the first of the day we noticed some blood coming through the drain line into the bag. This obviously meant there is some internal bleeding...cuz there's not supposed to be blood coming through. The doctors and the radiologist looked at it and quickly had a blood level drawn on Claire (hemoglobin). Her hemoglobin had dropped pretty significantly and they decided to draw one more level at 1:00 pm. If it was lower at that time, they would take her down for 'surgery' to try to stop the bleeding. Thankfully, her hemoglobin was stable at that blood draw and they decided to wait and see if it works itself out. She still does have some blood coming through, but they are taking their cues from Claire....and she felt good throughout the day....so they'll keep watching her blood level and hope it comes back up. She's definitely tired and worn down tonight, because of the loss of blood, but everything seems to be okay as of now.

Other than that, we had a pretty easy going, relaxing day. They cut her antibiotics down to one which she gets every 8 hrs. It's the weekend, so nothing else was really going on....just keeping the status quo!

She enjoyed a few visits from friends. It really brightened her spirit to see familiar faces and receive fun coloring pictures from friends. She even got a surprise from our friend next door who just received a kidney transplant. He gave her a mini Hello Kitty...and since she already had a larger one, she knew right away that the mini one would be just right for Mabel's hands. And so now both sisters have Hello Kitty's to cuddle with. Happy faces!!



We all enjoyed getting out for a stroll around the hospital in the famous red wagon.


And today the van was officially unloaded and the bags unpacked. We're sad we can be "there" but happy to be right where we need to be. Although the hotel bag we had packed has come in handy....just changed the name of it into our hospital bag and it's got everything we need in it for a night or two.....or 5. Jared's turn for luxury hospital sleeping tonight. I'm looking forward to a good night's rest!
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1 comment:

Grandpa Terry and Diana said...

That little red wagon has had quite a bit of activity the last little while.

We hope and pray that the coming week will be an improvement over the past week.

Love ya all.

November 6, 2011 at 8:06 AM

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