Crazy day! Jared took Claire in to start dialysis at 6:45. He's so great. I came at 8:00 and he came home to work the rest of the day. How nice it was to get there and only have an hour and a half left of dialysis!! AND we were done by 10:30. Sweet! I asked if he wanted to do that every day and he wasn't so hot on the idea.
We made it to Claire's ultrasound apt by 11:00 and Claire did really well. It took her a few minutes to settle down and realize she wasn't going to get poked or hurt--just a little gel on her tummy and legs and the magic wand to take the ultrasound pictures.
We came home for lunch and had a until 2:00 before we headed back to the hospital for our appointment with the doctor. The hematologist said that the blood clot is unfortunately still there, but it is looking better. The blood thinning shots are helping, so we will continue those until January when they will do another ultrasound and review the progress. If by January the clot is looking even better (but still there), they will keep her on the shot for another THREE MONTHS! (sigh). If the ultrasound in January shows it looks basically the same as it did today, they will stop the blood thinner and say that it's about as good as it's going to get...and plan on the body taking care of the rest of it. SO for at least another 2 months, we'll continue to give her sweet thighs shots twice a day at 4 a.m./p.m. and see where we're at in January.
And that's the word. It is what it is. But that won't stop us from praying for that clot to go AWAY!!
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.
Tuesday, November 17, 2009
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4 comments:
Don't you just love how they perform so well for strangers! Glad to hear the clot is getting a little better...time will do wonders! We'll keep praying!
AMEN to that! My girls will be angels and then WHAM, transform into crazies suddenly when someone needs my attention. :)
I hope that darn clot will just disintegrate. That is the word I will use from now on when I pray...
See ya!
Glad that your day went better. We will pray that the clot will go away. And I can only imagine CHAOS happening as soon as the doctor came in. That NEVER happens with our boys. Ever. :S)
Natalie, I'm still praying for the clot to go away! At least it's moving in the right direction. Out of curiosity, why do you have to the shots at 4 am and pm? I'm assuming if it could be done at a better time it would. Does the medicine interfere with dialysis or something? Bless your heart that on top of all of this you guys are getting up in the middle of the night to do something I'm sure you hate doing to your daughter!
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