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, October 28, 2011

Yes.

Yes. Claire got in to do the MRI today. Yes. It showed obstruction of the bile duct. Yes. She needs surgery to fix it. Yes. We're home.

Mayo is amazing. It really is remarkable that the first available apt for this particular scan was Nov. 22. And yet because of a very caring, devoted doctor, we got in this afternoon at 1:30 to do an MRI for a very special little girl. She had to be put under general anesthesia and hated it. She really hates breathing through the mask, even with root beer flavor. Sad scene.

Good news is that we found out what was wrong. The main bile duct is "tight" and not letting the bile flow through freely. Ironically, this can cause sever itching, especially in the hands and feet. Yup. That's Claire.

Again, because of a great doctor's devotion to his patient, Claire has surgery scheduled for Monday morning, first case. "I'll try to disrupt your planned vacation as little as possible." Really, it's no disruption at all. What WOULD be a disruption would be being 20 hours away from home and having a miserable, itchy little girl with a "TIGHT" bile duct!!!! We're flexible. We're packed. And we'll leave the van loaded until our little princess is ready for a REAL vacation!!

The surgery will entail opening/loosening/stretching/enlarging the bile duct so that everything can flow freely without causing irritation to the liver or to Claire's itchy body~! If there are no other complications, she shouldn't have to stay the night and can come home Monday afternoon/night.

If all goes well, we'll be able to leave for our vacation early next week....or maybe we'll wait for the weekend. Who know. Depends on how long we can tolerate living out of our van!

One brave little girl.

2 comments:

chris said...

I'll be keeping Claire in my thoughts and prayers. What wonderful doctors she has!

Grandpa Terry and Diana said...

Wow. Things change fast. And yes it is great to be so close to the Mayo Clinic. We love how you put your family first.

Our prayers will be with you and your family. Especially little Claire. She is truly one remarkable little girl.

Love ya.