Tuesday, March 12, 2013

A Cause for Celebration...


Today we are celebrating five unbelievable years...



Happy Birthday Lucy Grace...

we love you more than words can say!


Monday, March 11, 2013

Trying to Get Back on the Saddle Again...

I want to apologise for any confusion my last post may have caused, we were discharged from the hospital on Friday March first and arrived home at around dinner time.  We are home now and are trying to adjust to life outside of the hospital.  It is an amazing feeling being home day and night with all four of my kiddos and my husband.  Everyone is happy that we are home, but hands down the person that is the happiest...my husband:).  He makes me feel so loved and needed, just looking around my house is a reminder of that(think a much needed spring cleaning).

I'll be honest, it has not been the smoothest or easiest transition, our coming home, not that I was expecting it would be.  It has been awhile since I have taken care or our girl all by myself, all the while being a wife and mother to four of the most amazing kids (hey, it's my blog and I can boast if I want to:).  Taking care of Lucy 24/7 was a lot before her most recent issues, but it is even more now.  The minute we arrived home on Friday we were greeted by "the kids", our nurse, and infusion nurse, and also by the phone ringing.  I had to take the call as it was our infusion company calling to coordinate delivery of our weekly medical supplies for that evening....nothing like jumping in with two feet. Lucy's order is anywhere from six to eight boxes of meds and supplies weekly!  Recalling the number of meds for an entire week, TPN bags, fluid bags, med lines, lumen caps, needle syringes in 3ml, 5ml, and 10ml increments mind you, gloves, transfer caps, lab kits, dressing change kits, adhesive products, chlorascrub pads... and the list goes on and on (over 6 pages) that are  needed to take care of our girl at home is a cognitive exercise that rivals doing the Sunday New York Times cross word puzzle.  Medical inventory specialist, it's just one of the hundreds of job titles that I have.  Professional medical supply organizer, that is the job that I take on after my medical inventory specialist job has ended for the evening.

The kids, they were thrilled to see us walk in the door last Friday, they continue to keep saying "I can't believe that you and Lucy are home!".  Although yesterday, when I announced an official Marlett House cleaning day they did not sound as enthusiastic when they said, "oh yeah...Mom's home".  Each of us have had moments of difficulty, perhaps me more than anyone, but the kids have been a bit more dramatic about theirs.  I feel at times that I have divided myself into so many tiny pieces that I am going to crumble and not be able to be put back together.  Perhaps I fear more if I do crumble when I eventually get put back together I won't be the same.  Drew is always to first to recognize that I am the last to recognize the change that has occurred right before our eyes.  I think it's a survival mechanism,  I somehow attempt to try and make things go back to the way they were.  When I fail at this, because I will, it's inevitable nothing can or will ever stay the same even in the most ideal situation, I will then be able to see more clearly where we are and what has occurred.  I have processing delays, just like Lucy, only mine are more emotional delays.

It doesn't help that we are functioning on very little sleep...think newborn baby only ours is nearly 5 and has a central line infusing dozens of meds, TPN, and fluids 24 hours a day.  A heart rate/pulse ox monitor that alarms at all hours of the day and night, sometimes for false alarms and sometimes for legitimate alarms which means you can't ignore any alarm.  Connected to that baby is over fifty feet of oxygen tubing that no matter how I coil it up, inevitably, I will trip over it in the middle of the night. Our baby has over two dozen IV meds to infuse that are so strategically timed it can make even the most punctual person late if they had to keep to a med schedule like ours.  There simply is very little time in between meds to do anything else.  A GJ tube that is connected to two drainage bags 24/7 that like to pour out bile on some days and not on others which just has me going huh? most days.  One supra pubic catheter that has almost ended our straight cathing days,  that is when it does not get clogged.  This only tends to happen on the very rare occasion when I want to leave our house, this is just how our life is, we just have to learn to roll with it.  Just like with a newborn baby, you have to learn to sleep when the baby does,  we are learning.  Of course day light savings was just a cruel occurrence this weekend.

Remembering EVERYTHING, it's just like remembering how to ride a bike...not really.  I find myself having to write a lot of things down so I can plot out just how I am going to do this or that, my memory is not what it used to be, but I also have a lot more to remember .  When Lucy was born I had a labor and delivery nurse, who also happened to be the morther of four, give me some advice... "get yourself a notebook and write it down", she wasn't kidding!   I do feel like I have my groove back when it comes to taking care of Lucy, I really had no choice but to jump back on the saddle again.  As for the rest of our life, it's a work in progress.   Laundry is caught up for the most part, and we went to Costco for the first time this year.  FYI, it's better to go more often, it will save your eyes from popping out of your head when you see the finale tally at the bottom of that very long receipt.   Our house is slowing starting to look like a mama lives here too, but I don't want to give you the wrong impression, it's by no means clean.  Let's just say I am the master of the five minute pick up.

Our life is just that, our life, we are doing our best with what we have been given.  I write all of this not for your pity but to document just where we are in our life at the moment.  Coming home from a very long hospitalization with a child who is not going to "get better" but is "doing better" is a strange feeling.  I am not sure what direction life is headed most days, and sometimes I am just fine with that and other days it just plain sucks.


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 :)