Thursday, August 15, 2013

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.

1 comment:

Jessica said...

Just letting you know God put you on my heart tonight. Prayers for all of you. God loves you, and we care deeply about your family too. Lucy reminds me so much of Eithene, she always has a special place in my heart. <3