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.


Friday, April 9, 2010

Oh MAN!

Ughhhhhh! I just got a call from the surgeon who is going to be placing her port next Tuesday. They did an ultrasound of her neck yesterday to get a good idea of where they would like to put the port and they found a BLOOD CLOT in her neck where her dialysis catheter was!!! What does that mean? More Lovenox injections....shots in the thighs twice a day for 3 more months!! SOOOOO not what we wanted to have happen. That also means a lot more blood draws, as they have to test her heparin level quite frequently to make sure it's not too high or low.

Okay, I know....it could be worse. This isn't the worst thing in the world that could happen. I could imagine up a handful of real devastating news. And I AM grateful to at least know there was an issue so it could be treated before something bad happened because of it. But this is just a PAIN in the NECK!! PUN INTENDED!! and in those sweet little thighs.

The surgery to place the port-a-cath is still on for Tuesday. The site of where to put the port is going to be limited since her right side (with the clot) will be out of the question. We're going need this port to work like a charm with the extra blood draws she's going to need.

Off to the hospital to pick up the shots. Back in the morning to check her heparin level after two injections. Carry on.

7 comments:

chris said...

Dang! Hang in there, Skinners. Claire is amazing, and things will work out. Best wishes from Idaho!

Anonymous said...

Man, that is bummer news. I am so sorry to hear that. We had a similar procedure on Corrigan due to his very frequent blood draws and we could kick ourselves for waiting as long as we did..what a blessing that little port has been!

Thinking of you!

Mindy

** Adrian ** said...

OOOH! What sad news! I'm SOO sad for all of you! Poor Jared (& you) for having to GIVE Claire more shots-- Poor Claire for having to GET more shots-- & Poor you & Benson for having to SEE Claire endure even more pain. Thank heavens Claire is SUCH A TROOPER!!

:( I wish I was there to give you a big {{HUG}}!!! I love you guys!!! I'll be praying that the clot goes away FAST!!!

~adelle said...

BOOOOOOOOO. :(

Ryan & Keri said...

Oh Natalie. We will be thinking of you guys and sweet Claire. And Benson too. :D)

Amy said...

Bless her heart! So sorry. :(

Becky E said...

What a bummer. The poor thing! We will keep you in our prayers