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, December 24, 2009

Dec 24 9:30 pm

All done. All done. Jared and I estimated that we heard that phrase from Claire at least 500 times today. No joke!! She is all done! Too bad we'll still be hanging around for a while. The good news is that they think we might be able to go home sometime mid-next week! That would be so nice. One of the quickest recoveries they said they've seen from a kidney/liver transplant patient. She really is doing great.

Today we took out her foley catheter. That is what has been measuring her urine output. We will now have to start weighing her diapers to see how much she urinates. They said it isn't unusual for kids to not want to go potty on their own after being catheterized, so we had to empty her bladder 2 hours later with a catheter. We were all every excited that she went on her own, though, just a few minutes ago! So things are coming together in that little body of hers.

We also took out one of the drain tubes that comes out of her left lower abdomen. The one on the right is still there, so they'll keep that one in until the drainage slows down. AND they got to remove her CVP line on the right side of her neck! YEAH!! SO the only lines she has in her body are the dialysis catheter (which they are using to give medicine) and the right drainage tube! A lot less plastic coming out of her today. Definitely a step in the right direction.

Another ultrasound was done on both her kidney and liver today. Blood flow to both organs looks great. They also did an ultrasound on her right upper leg where her blood clot is from the heart surgery. They said the clot looks smaller than it did in November but is still there. We're not sure if they will have us continue the heparin shots after we get home or not.


We had a fun time taking Claire for a wagon ride today. She wasn't so sure about it, but it was nice to get her out of the room and make a few circles around the PICU.

Gifty is doing okay today. She had an MRI to see if they could see any more info about her brain. When I talked with her mom they didn't know results from that yet. But they are hopeful things will turn out okay. They just want their little one back....no matter what condition her body/mind is in....they just want her back!! Her condition is stable today so hopefully it remains that way.
What a Christmas Eve we'll have to remember. There is certainly no other place we'd rather be tonight.
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1 comment:

Marshall n Mylinda said...

I know you probably get this a lot, but I admire you! Here I was gripping about little things around the house with my kids just today, and look at you. You are such great parents and it will all pay off! Thanks for being a strength in the meantime to look at when I am feeling down! you're always in our prayers.

December 26, 2009 at 9:52 PM

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