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, March 1, 2012

another hospital day

13 hours later...we're home!!

It was a good day today. Long. But good. After an early arrival at the hospital, Claire's procedure unfortunately didn't even begin till 9:30. Here's a tip: if you want a lesson in patience, visit the hospital often. Other hints for success: go with a child (or 3), fasting, tired, and make sure it's early in the morning. Works even better with headaches, tummy aches, pokes looming in the near future, and a forgotten blanket. (Our lesson wasn't that extreme...just giving you some ideas for that patience thing!!)

Okay, it really wasn't that bad. We're used to the wait. Claire had cartoons, I had a Kindle, together we had a snuggle--so it was all good.

Good news is that things went well for Claire's biopsy and bile duct stretch. The doctor said he was encouraged this time! The bile duct hadn't completely "shrunk" back around the tube this month....it held it's form instead of collapsing around the tube. His main comment was that he's not discouraged, he thinks we're making progress, still has no clue on a timeline for this, but thinks we're getting somewhere. So that's good. Encouraging. And so we'll see him again next month. We will hear from the doctors tomorrow about the results from the liver biopsy.

Claire woke up pleasantly from the anesthesia, but wasn't happy about the temporary IV placed in her hand. It remained for the day, but now she's free. She needed a bit of extra time at the hospital in bed this time to rest and recover though. I think she was sore from the biopsy poke and was nauseated a lot of the afternoon. But by evening she was back to herself and labs reassured us that she was good to go home. We still haven't discussed what to do with placing or not placing another pic line; so for now, it's nice to just have one external tube to take care of.

Benson and Mabel had a good day with friends but Claire was especially happy to see their faces in her room later in the day.

Claire enjoyed some more painting projects to pass the time.

Mabel enjoyed a meal that made her happy!

And it's a family favorite to get out in that little red wagon and stroll the hospital halls...only stepping on the white, blue, and yellow colors...and NEVER on a crack!!

1 comment:

Grandpa Terry and Diana said...

That Claire is a real trooper. She has to have a heart of gold.

You must have the patience of Job.