Wednesday, August 21, 2013

Wanna get away...

And take a jump in the pool...


Sophie, Lucy... is that you?


And feel the sand in between your toes...or not!


And dip your toes in the ocean...




And feel the sun on your face....


And the wind in you hair...



We're making memories...to last a lifetime!


Wish you were here!

Thursday, August 15, 2013

A little about today...

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.



No news does not mean NO news...

No news unfortunately does not translate to mean that there is NO news.  Life is BUSY these days, and   unfortunately illness does not understand the concept of summer vacation, medical dramas abound!  We have been to the ED at least twice in the past two weeks, have had multiple clinic visits in the same two weeks, and have spent hours on the phone/email communicating with our knowledgeable medical team all in an effort to try and figure our girl's latest medical issues/mysteries.

Which brings me to today, Lucy is scheduled this afternoon to have another cholecystostomy tube placed in IR under general anaesthesia.   While Luc is under we are going to maximize our use of anesthesia and give Lucy all new plumbing - a new GJ-tube and a new suprapubic catheter too.  Normally, we do not change these tubes out under general anesthesia, the risks do not out weigh the benefits, but that's not to say Lucy wouldn't prefer to be "knocked out" for these tube changes.  They are uncomfortable for her and she hates having going through them, but they are generally very quick procedures that afterwards ends with many mommy hugs and and kisses as well as a promise of something I would not normally agree to :).

In my last blog post I wrote that our IR team was successful in dilating and placing a new drainage tube in Lucy's gallbladder, the same type of tube that she had in before.  Unfortunately, that tube has shifted position and has migrated out of Lucy's gallbladder causing fluid to leak out and around her stoma site.  Fortunately it is still inside her stoma tract keeping her stoma dilated which hopefully means that today's procedure will be smoother.  We are going to attempt to try using a balloon type tube inside of Lucy's gallbladder as opposed to a Malecot tube.  Our hope is that the balloon inside will keep the tube in position longer.  On the flip side our fear is that the balloon inside will take up a substantial amount of space inside of Lucy's gallbladder which could affect the amount of bile drainage that comes out of the tube.  What we do know is that we need to attempt to keep some type of drain in for longer than a week and a half.  Yep, that's how long her last tube lasted.  Lucy's common bile duct has restenosis again, we learned this during the last tube placement when they did a repeat cholangraphy.  We need some type of tube to drain in order to alleviate the pressure inside of Lucy's biliary system, it's the pressure inside which causes her so much pain.

Along with our medical life we have a family life which includes four kids, two parents, nurses, and one goldfish.  It is summer and we are bound and determined to enjoy some of it!  If all goes well today and everything else in the universe aligns, we are packing up(I write it like it's just that simple -ha) and heading to the beach to enjoy some fun in the sun and to make those all important memories.  The preparations for this trip alone could be a medical drama of it's own, but just because something is complicated doesn't mean you shouldn't do it!

Your thoughts and prayers, love and support are greatly appreciated.  We could never do this alone, and are so grateful that we don't have to!!!  For all of you prayers warriors out there, Lucy's procedure time is 2 pm.  I will try and update later.