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, October 12, 2009

Oct 12

We get to take our princess home today!! We are so excited! Well to be honest, we were really excited at first. But as we've been waiting for all the discharge instructions, we've been reading over a book they gave us about giving subcutaneous shots. My mood kinda changed a bit after reading how/when/where we have to give Claire shots: TWICE a day for up to THREE MONTHS, in the abdomen, at 5:00 a.m. and 5:00 p.m. What?!?

The clot unfortunately hasn't improved. In fact, it has extended a bit closer to the tummy area. So it goes from the upper part of her right thigh to just below and to the right of her belly button. They not super worried about it yet, but it still definitely needs to be treated with heparin every day. The worry is that the clot could continue to extend and even go into her heart, which could then be a matter of life of death. Giving her a dose of heparin every 12 hours should keep the clot from extending or growing bigger. The hope is that the body will then do it's job and dissolve the clot on it's own.

As if the princess doesn't already have enough trauma with medical intervention! Now we have to be the bad ones in causing some amount of pain. sigh. I already warned Jared that I would help him, but I most likely won't be giving her any shots myself.

They are going to do another ultrasound on Monday to see where she's at.

So YES, we are soooooooo excited to ALL be home in our beds tonight! I know she will improve so much faster in the comfort of her own home! We just have to be EXTRA careful of any falls, cuts, or anything that could cause internal/external bleeding. Since we're thinning her blood out so the clot in her leg won't continue to clot, we have to be careful that she doesn't have any trauma that would cause her body to bleed and not be able to stop.

Benson gets the prize of being the first one to make Claire laugh! Not much surprise there. That was one of the best sounds we've heard for a long time! I'll post the darling video of that when we get home later tonight!

7 comments:

~adelle said...

YES! I am so excited! SOOOOOO EXCITED! Good luck on your first night home. What great news.

Unknown said...

Hooray!! Wonderful news!

** Adrian ** said...

HOW WONDERFUL!!! I'm so thrilled for you guys! To be at home with your own bed is a HUGE thing!!! I'm sure Claire will do so much better at home!! I bet it was the greatest thing ever to hear her laugh again!!! GREAT JOB, BENSON!!!

Those shots sure don't sound fun. I'll keep praying for the clot to go away QUICKLY!! Hopefully it won't really be 3 months. That would be tough!

John & Shauna said...

I am soooooooo happy for you all to be able to go home. Sounds like the best place to recover. Bummer about the shots. I love that Benson is able to make her laugh!

Megan Hawks said...

Yay!!! Yippeee!!! Horray!!!
Going home sounds wonderful! Reading bedtime stories, watching Dora, and sleeping in your own bed - in your own home will do wonders! Praying for you guys :)

J & M Shumate Family said...

SOOOO glad you are finally home. You kids truly are adorable together. I love the little "boos". HUGS!!!

Nathan & Michelle Watabe said...

Hurray! There's the Claire we remember!!!We went to Costa Vida last night and saw one of the COTA boxes that has Benson and Claire's picture on it and the kids got really excited about it!