Friday, March 1, 2013

We're going home...

We've been here a long time...

I never know how long an admission is going to last, and for some reason I never pack for more than three days, I just don't.  In the back of my mind somewhere buried deep I have convinced myself that planning for three days is just the right amount of time.  I bet if you asked Drew he would tell you that he wishes I would plan for more days as he is the one who is on the other end of the phone when I ask him to bring me my black shirt with the scoop neck not the v-neck, and the socks with the stripes but not the thick ones the thinner ones.  Oh, and can you also bring Lucy her baby doll with the purple booties not to be confused with her purple baby, and her pajamas with the barn animals.   I say it as if she only has one pair, but seriously what little kid only has one pair of pajamas with barn animals.  So naturally Drew responds with, which pajamas with the barn animals, the pigs or the cows, or the ones that Lucy thinks are pigs but are really cows?

We have managed to live life as family in two separate locations.  Hands down the question that we get asked the most, "How do you do it?"!  The answer to this question could be a novel, or a book series if I were to write about the minute details, but the simple answer is...we are just so grateful that we can do it!  It is not easy, but we choose not to complain, and to be thankful for ALL that we have.  That is not to say that we do not feel the emotions, the pain, and the hardships, oh we do, believe me we do.  But we know that we would rather be doing all that we have to to do for our girl, for our family, than to not have her here with us at all.  It's both the blessing and curse of having a medically fragile child....you can and will never take life for granted.

Our expectations for Lucy's stent placement are very different from what is our reality.  There is no such thing as a "permanent" stent, more like long term would be a better description of the type of stent that was placed inside of Lucy's bile duct.  Metal bilary stents are typically placed in adults as a palliative measure for those who have some type of malignancy or tumor in their bile duct that is deemed inoperable.  The patency of these types of stents is approximately 6 months, the prognosis for the individuals who require a metal bilary stent is sadly often less than six months, hence the confusion with the word permanent.  There are no studies done on how long a metal bilary stent can be placed in a child's anatomy, it is assumed based on a child's size that they should stay in for half of the amount of time as an adults.  Even less is better, as the longer it remains in the greater the risk that the stent can become embedded in the wall of the bile duct, increasing the infection risk, and even worse not being able to be removed.  I tell you all of this because for our girl this means that the stent that we placed in her bile duct is a very short term solution for a long term problem.  The doctor at Hopkins agreed to placing a stent in Lucy as a palliative measure, but told us that he agreed with the Jefferson doctor in that the only "fix" for Lucy's bile duct is maximally invasive surgery.

We were disappointed when we realized this,and adding to the disappointment was what the doctor learned about Lucy's bile duct when he went into place the stent.  It is significantly damaged.  His recommendation is to have the stent removed in 8 weeks.  It is thought that once the sent is removed Lucy will most likely develop another stricture either upon removal or soon after.  This is not what we were expecting, in fact we choose to place the stent in the hopes of avoiding having to put her through major surgery.

Once again, we are now at a crossroads.  Our options for our girl are few, and are what we are describing as having to decide between God-awful and horrific choices.  We are putting off doing her gallbladder surgery at the moment as we have even bigger surgery options to consider.  I will not detail our options at the moment as we are still trying to gain clarity on the issues.  What I will say is that we need some time... time to think, time to process, and time away from this place.

Lucy is on continual IV antibiotics and IV antifungals, what we refer to as the big guns, all in an effort to keep the infections at bay.  She is and has been on a regimen of continual antibiotics to control the overgrowth of bacteria in her intestines.  We are doing all that we can at the moment to keep her infection free.  Health wise, Lucy is stable,  she is about as good as she is going to get at the moment and for that we are so very very grateful.  After having some serious yet more difficult discussions with the good doc on Monday morning, he said to me during our conversation, "do you want to go home, and take a break from this place, for a few weeks while we gather information and make some decisions...", my response was simply... "yes"!

You know the saying "it takes a village...", if you knew the number of people in our life who make the impossible possible for us to take our girl home and live life, I think you might tell me that it takes more than a village, it takes an entire city!  Lucy's level of care is greater than ever, but we are going to go home for a few weeks and do what we do best...live life!  I will admit that I am nervous, like I said we have been here a long time, having around the clock nursing care and immediate medical attention when we need it is very comforting.  We are all going to have to adjust to life together again.

The next few weeks are full of special celebrations, a certain little girl's 5th birthday is just around the corner, and another one's 38th birthday too:).  Birthdays are all about celebrating someones life, and that is just what we intend to do...celebrate life!

We're going home!

(By the way...please don't say anything to our kids, we're going to surprise them!!  We're veterans at this, we know better than to say we are coming home until we have the actual discharge papers in hand...even so we have been readmitted once after signing the paper .  Oh and don't be fooled, just because I initially only packed for three days, does not mean that we have only three days worth of stuff to take home.  It's quite the contrary, we have three months of stuff to take home :)

4 comments:

Kim Anderson said...

Yay!!! So happy for you!

Anne Kerr Thomas said...

I'm so glad you guys get to go home and be under one roof for a change.

natb said...

Continuing to pray for you. It was nice to see you at church yesterday. Praying that this time at home is as "normal" as it can be.

Jessica said...

I hope you are enjoying life at home. I can't believe Lucy is almost five.... that is incredible! I am sure it will be a celebration worthy of a princess! And I hope you get SOME sleep.... all of those IV meds and infusions and other care.... I know what that is like, and after 10 days at home with Eithene's last admission, *I* almost needed to be admitted. I hope that beautiful memories are being made!