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, October 27, 2011

itching to GO

Today Claire was talking on the phone to her grandma and one of her random comments was, "I don't know why our house is such a mess." I DO! We're trying to leave to drive to Idaho tomorrow and making a mess is just part of that process! The kids are very excited for their "vacation." They've been counting down the days the entire month and it's finally here! If Mabel could talk and realize what was coming (20 hours in her car seat) she would probably tell us that she's not so excited, but that she will patiently endure. Right Mabel?!! RIGHT! (??)

But before we get too excited...Claire's got an itch. And I'm afraid it's not an ordinary 4-year old kind of itch. She's really really itchy. And after talking with the doctor today, it just might be because of her liver. She started itching on Monday; we did blood work on Tuesday and her liver numbers were elevated. Nothing helps...creams, lotion, benedryl, zyrtec. It maybe makes her feel better mentally, but the best medicine in this case is distraction. A little dose from Mabel and an extra dose from Benson is the best treatment so far. And yes, it helps. But bed time is pretty much a nightmare starting before she gets to sleep. She drew blood today from itching so hard....even with her fingernails next to non-existent.

So I chatted with the liver doctor and nurse today and even with her elevated liver numbers, they were okay with still watching and waiting to see what happens throughout the next month.....until I told them about the itch. The doctor asked me if the palms of her hands itch or the flats of her feet. I hadn't particularly noticed, except that I did know she complained about her feet a lot. I don't remember the exact medical explanation, but because of something to do with the BILE of the liver....it can cause sever itchiness, especially in those particular areas. So I paid attention to it the rest of the day. And for most of the day she was completely distracted by Thing 1 and Thing 2 (Cat in the Hat analogy) and didn't itch an inch. But then it came time to settle down, read some books, and go to bed. She only had two complaints: "my HANDS my FEET. Ouchie. They hurt. They itch."

Before I got off the phone this afternoon, the doctor said he wanted to do an MRI before we left town to see how the liver is processing the bile. I got a call a few hours later and they said the first available apt was Nov 22. Great. We'll be home by then. Oh wait. Not so great. We need it tomorrow at 7 am.

Last I heard is that they're going to work on getting Claire in tomorrow. Let's hope they do. Soon.

1 comment:

~adelle said...

AHHH I hope it turns out to be nothing and you guys can jet out of town! Bad timing? Darn!!

I will send out a little prayer for that tiny liver.

Keep me posted!