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A little about today...

August 16, 2013
Our day did not go exactly as we had hoped it would....

We are home, which is a good thing, but I am on fever patrol at the moment.  Lucy is currently sitting right at our threshold for what we consider a fever.

We are making an antibiotic switch in just a about an hour, I am hoping that this med will do what it has done for us in the past and kill the bad bugs, if indeed that is what is causing this rise in body temperature.

Lucy's procedure took much longer than any of us expected today, almost three hours.  There were complications, multiple complications.

Our IR doc and surgeon were both unsuccessful in placing a different type of drain in Lucy's gallbladder.  Her gallbladder is simply too diseased.

They were able to place the same type of tube, a Malecot tube, inside of Lucy's gallbladder, but a smaller one.  It's not ideal.  She is leaking around the tube.  It is sutured in place again, but the tube will most likely come out sooner rather than later.

Even worse, we learned that Lucy has a significant sized stricture further down in common her bile duct that is preventing the flow of bile from leaving.  We knew that her bile duct had restenosis a few weeks ago when we replaced her tube, but at that time there was a narrow opening in which bile could still drain. This is no longer the situation.

Due to the back up of bile and pressure inside of her, her entire biliary system is becoming more diseased.

We are faced with having to make some REALLY TOUGH decisions.

It is only a matter of time before our girl gets sick, really really sick again.  We described her as being a bacterial time bomb today.  We live with the fear that her next infection could be her last.

Our surgeon came out of the procedure to "talk" with us, by the way he has the worst poker face.  He called our main doc to come and join in on the conversation.  Three different scenarios were discussed, none of which are good.

We can't fix the problem, we can't fix Lucy.

What we are hoping to do, and what we believe we have done all of Lucy's life, is to choose the option that will give Lucy the best longest life.  For us this means choosing the option that will give Lucy the most comfort.  We could try and keep Lucy alive for a long time, but she will suffer and that is not what we want for our girl.

We all agreed that we need to think about things, but quickly.  Our surgeon is going to reach out to the doc at Hopkins and inquire some more about our girls unique biliary system.

With the blessing of our entire medical team, we are moving forward with our beach vacation.  The good doc is even reaching out to the nearest children's hospital for us, you know, just in case.

Thank you for your thoughts and prayers, love and support.

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