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.


Wednesday, February 26, 2014

biopsy day

Whenever Claire has a lot of medical stuff going on, the blue doctor bucket usually gets pulled out of the closet at our house.  Mabel is usually (and happily) the victim.  After all the pokes Claire has had lately, she has got this blood work thing down!  She knows how to find the "good" veins and she's sure NOT to move the needle (plastic end of a tube) around when drawing the blood out…because she know how bad that HURTS!!  She reassures her patient that she WON'T do that.  The patient helps out by holding the 'needle' on while she rips off some medical tape for a bandaid.  Then it's on to the next arm because one poke is just never enough :)





And then it's on to reality a few hours later with the roles slightly switched.  Mabel gets to go play at a friends house (most likely NOT drawing blood) while Claire takes her turn being the patient yet again.  The biopsy went well yesterday.  Claire was nervous.  She does NOT like being put to sleep.  She went crazy when we walked in the operating room.  After a good long couple of minutes, we finally got her to settle down.  It was either hold her down on the bed and force the sleeping mask on, or relax and let Mommy hold you while you peacefully go to sleep.  Thankfully she eventually choose the later and let me hold her to sleep.  Phew.  One more "off to sleep" down.  Sad that I can't remember or couldn't even try to count how many kisses I've stollen from her forehead as she lays on the operating room breathing through a mask.  Too many for 6 short years.  

But even so we did it again and once again, everything went well.  The biopsy was quick.  Not much more than an hour later she was awake in the recovery room and watching a movie.  She wasn't so happy about having to lay on her stomach for the next three hours.  The dr.s wanted pressure to be on the site of the kidney to help compress any possible bleeding.  So she watched two movies, on her tummy while I fed her crackers, popsicles, bread and drinks!  She was starving after having to fast breakfast and lunch; the food definitely made her spirit rise a bit.  After the IV finally came out of her hand, she was feeling much more free and was excited to get home. We luckily made it home for a late dinner and were so glad to be able to sleep a truly GOOD night's rest at home.  

Haven't heard any results yet.  TBA.

{in the waiting room before the biopsy} 

{After the biopsy watching Charlottes' Web}

2 comments:

Anonymous said...

Someone directed me to your blog a few years ago, right after we moved to Denver. We are frequent flyers at Childrens too, my 13 yo son has spina bifida. Such a wonderful hospital. We are in the Green Valley ward up by the airport. Just wanted to say "hi!"

-Christy Whetten

~adelle said...

Sweet little Claire girl. She is certainly a trooper! I will send her my love and thoughts as you wait for the results.