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Decisions, Decisions...

May 17, 2013
Last week we met with our surgeon to discuss our options for Lucy.  To say we were more than a little nervous about having this discussion, a discussion in which we were faced with having to make a decision on which way we were going to take Lucy's life, would be stating the obvious.  As I outlined in a previous post, we are faced with some really tough choices, having to choose between one or the other, well that's like trying to choose which of my children I love the most - it's impossible!

Thankfully (not sure if this is the appropriate word, but it's the best word I can think of at the moment), we were given another option, an option that Drew and I are affectionately calling option 1.5.  It's falls in between our two options; our first option of doing nothing to try and fix Lucy's bile duct issues, and option two of doing everything we can to try and fix Lucy's bile duct issues.  Option 1.5 is a less invasive procedure, but one that still involves surgery.  However, it is a surgery that has been done before, but not exactly for the use we are intending.  Option 1.5 was presented to us  as an option that could help alleviated some of Lucy's pain by helping to reduce the amount of pressure in Lucy's common bile duct.  This option involves surgically placing a drain in her gallbladder, also known as a cholecystostomy.  A quick plumbing lesson on bile drainage.  Bile is formed in your liver and flows into the gallbladder.  It then exits into the common bile duct, where it continues it's journey down past the pancreatic duct opening and into the duodenum (the top portion of the small intestine).  By placing a drain in Lucy's gallbladder we are hoping to intercept the flow of bile from entering her common bile duct (CBD) by having it drain out of her gallbladder into a drainage bag.  It is our hope that by reducing the amount of bile entering her bile duct we will reduce the pressure inside of her biliary system.  It is the pressure from the accumulation and back up of bile that is thought to be causing Lucy so much pain.  If we reduce the pressure we are in turn hoping to reduce her pain.

There are a tremendous amount of unknowns with this procedure.  We know Lucy's gallbladder does not function, we confirmed this when we did a HIDA scan back in January.  It is full of sludge and stones, and in all honestly needs to be removed.  But if we keep it, create a stoma, and drain it we believe that this diseased organ can be used to serve a purpose.  That is if the organ isn't too diseased.  We really will not know how things look until we go in and see it for ourselves.  Our surgeon, Dr. K, is giving us 50/50 odds at being able to do this procedure laparoscopically.  However any procedure, be it laparoscopic or open, in which we have to work around or near Lucy's diseased intestines poses a huge risk of infection.  The risk of infection or sepsis is very real with this procedure!

Dr K is not sure what device he is going to use to create the drain, but we did rule out creating any sort of ostomy, bile is just too acidic for an ostomy.  Again he is going to have to see what things look like and then make a call as to what hardware he is going to use for a drain.  Where exactly Lucy's gallbladder is internally also plays a factor, this will only work if we can create a stoma that will allow bile to drain via gravity.  It's prime real estate on Lucy's torso, her central line is placed on the same side of her body as her gallbladder, albeit higher up, but nonetheless it takes up one fourth of her torso. Her GJ is somewhere on her middle left, and her supra-pubic catheter is smack dab in the middle of her body about half way below her belly button.  Her supra-pubic should hopefully not interfere with the placement of this new stoma :).

This surgery does nothing to eliminate Lucy's recurring cholangitis infection risk as her bile duct will still be connected to her diseased small intestine.  Our plan to keep the infections at bay is to keep Lucy on the "big gun" antibiotics and anti-fungals indefinitely.  As for the stent, the best way to remove it is via ERCP, which means another trip/procedure back to Johns Hopkins in Baltimore sometime in the very near future.  It has to go, it poses an even bigger risk of infection if left in place.  We understand that Lucy will most likely develop a stricture either upon stent or soon thereafter which is why draining her and alleviating the pressure is so import.

We are back at DuPont tonight, we arrived earlier in the day today to prep for surgery tomorrow.  We are moving forward with this procedure because it has the potential of improving Lucy's quality of life, if it works.  If it doesn't work, it is somewhat reversible in that we can pull the drain and close the stoma, and possibly remove the gallbladder if need be and her anatomy will remain in tact for the most part.  We really won't know if it works until we try it.  We are going to be holding our breath a lot in the next few weeks, hoping and praying for a positive outcome.  If things don't go as planned we'll have to go back to the drawing board so to speak, but the fear of putting Lucy through anything more invasive has us all worried!  We are planning on going back to Hopkins just as soon as she recovers from this surgery.  We have surpassed the eight week mark with this stent and as such we are left wondering if it will come out, God I hope so, but again it is another unknown.

Lucy is scheduled for surgery at around 2:00 Friday afternoon, I know many of you won't read this before that so I just wanted to be clear on her her time for all of you prayer warriors out there.  At the same time that Dr K is doing his thing our urologist is going to be doing some work on Lucy's bladder.  We are hoping to place a larger catheter in Lucy's bladder stoma to allow for better drainage.  To say we are nervous is again stating the obvious, but our reasons for moving forward with this fall in line with what we have wanted for Lucy all of her life.
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Jacqueline Di Lorenzo said...

Praying for you... especially today at 2 PM!

~Jacqueline from NC

Clara-Leigh said...

I am logging off and praying all day!!!! Wish I could do more to help in some way, but I know that God is working on Lucy, through Lucy and each of you. May His peace be larger than the fear!!!

Franci said...

Thinking of you today and always with much love! Your daffodils are beautiful :)

Lori said...

1:55pm. Praying!!!

joan's blessings said...

reading this at 1:50pm...praying