monday update

Making Benson's Christmas list is as easy as singing a song now!!

"All I want for Christmas is my two froth teeth. My two front teeth. Yes my two front teeth!"

He was a bit sentimental about giving up his tooth to the tooth fairy quite yet. He said he's going to hang onto it for a few more days after he's had some more time to "see" it and say his last "goodbyes!"

And Mabel's hand! Much better, right?! Over the next year it will continue to get lighter and lighter. She's using it great now and getting around just fine. Still not walking yet...but on the verge!

So the plan for Claire is as follows:

Sometime within the next 2-3 weeks, the surgeon will try dilating her bile duct again. At this time, they may try putting in a tube internally...going in through her mouth to place the tube in the bile duct. This would allow her to have the external line/bag removed. They just aren't sure if they have a 'scope' small enough to get where they need to go to place the tube. It works great for adults....kids are tougher because of their size. But they'll try. If that works, they will replace that tube every 6 weeks with a larger tube and do this 3 times...increasing the size of the tube each time...thus stretching/dilating the bile duct larger.

If placing the tube internally doesn't fit or work, they will most likely keep her external tube as she has in now and switch that tube out every month or so, increasing it's size with each pass...still trying to stretch the duct.

All in all, surgically opening her up and trying to revise it is the least desirable and the very last option. Her transplant surgeon that I talked with today said she's afraid it would cause more problems than the one they're going in there to fix. She strongly favors trying to dilate the duct, either with the external tube/bag or with the tube placed internally until it stretches wide enough to stay open itself. She seemed fairly optimistic that over a period of time, this would work. It's obviously not ideal to have a 4-year old connected to a tube/bag as she is now....but looking at the big perspective, it actually is the best option with the least risk. And on the bright side, time goes by so incredibly fast (and anyone who doesn't agree needs to tell me your secret!) So even if she does have this tube in for a number of months.....it's worth it!! Facing major surgery and other potential complications is something we'd certainly like to avoid if time and a slight inconvenience is the other option. We'll take it.

The surgeon also said they don't know why this happened, especially at this stage in the game. The connection they made when the transplant occurred was tight...she was small...and splitting the liver also caused her to have less bile duct to work with....making it a small connection to begin with. That's the best explanation she could come up with.

Claire commented tonight while watching Mabel take a bath that it was kind of hard and not very fun for her to get clean now...with a pic line and her drain line/bag. She said she didn't like it very much and was telling me all about the bath toys she was going to play with when she was finally able to go in the water again. And she will. She's patient. She understands.

Skilled doctors, nurses, and surgeons have saved our little girl's life time and time again with their cumulative knowledge and expertise. We are so grateful for the miracles of medicine and those who practice it with such precision. But along with a great medical team, we are also adding our share of support.

Faith. Prayers. Fasting. Blessings. Miracles.