COMPLETE Surgery Update (Entire Thing)

COMPLETE Surgery Update (Entire Thing)

Here I sit on this gray Saturday afternoon.  There is calmness in this house as my beloved bride and darling daughter sleep cuddled together in our bed.  The gentle blowing fall breeze, the raindrops cascading through the turning leaves of the trees, the distant sound of the washer and dryer working, all is grey, quiet and calm.  It is weird to think that just a few short days ago we sat in a waiting room for seven and a half hours waiting for our darling daughter to come out of her second cranio surgery, and the fifth surgery she has had in her short 18 month life. 

I already posted what it was like to watch them take her away for surgery here.  I am not one to boast, but that moment screamed for me to try to capture it.  Though it is but a mere glimpse into that moment, it makes me cry to even read it. 

Over the time that we were waiting to see our sweet little girl again, there were many other such observations.  Some made it onto the blog through my updates, but here are some others for you to consider: 

Though there is a gaping emptiness that goes from your heart, through your soul and into the pit of your stomach, food never looks, smells or tastes good.  Though I had no desire to eat, my beloved bride (whom was forced to eat because she is, after all, 35 weeks pregnant) could not finish her food.  Reluctantly I tried to eat what she had ordered, and the whole world was bland to me.  There was no desire to taste the food, to chew it, or to swallow.  There was but a mere decimal of a place in my stomach that thankfully took the food in.  I know that this is related to stress.  But there is something ever so unique about the lack of hunger that one feels while in that waiting room.

It is easy to be jealous and happy for another person at the same time.  I counted 21 different sets of parents who waited in that room with us; all but one set arrived after we did.  Every single set left to pick up their children before we did.  In fact, I was the only one that was receiving calls from the operating room.  There was a pang of jealousy that resided each time a doctor or nurse came to collect the anxiously awaiting parents, this I have to admit.  However, it was completely and quickly overrun by a sense of happiness for them.  Happiness for they were able to see their children, leaves this waiting room, finds themselves elated and overjoyed that this part was over.  Deep down there was something pulling on my heart, letting me know, that we would have to endure just a little longer.

No matter what was going on in the room, when the phone rang, everyone stopped talking, texting, playing games, eating, and focused on the lumbering father that I am.  They watched me pick up the receiver, and waited for me to hang up.  Now, I am not just talking about the friends and family that were there in the waiting room with us… but about everyone in the room. For a moment we all recognized that we were sharing in a connection.  A connection that we would never talk about, nor remember, but one that existed for as long as we were in this room together.  When I would relay the message to my friends and family, there was a palpable sigh from the other people in the room, and they would all resume what they were doing before.

Time, for all of its constant existence, is fickle at best in the waiting room.  There are no clocks in the waiting room.  This means that you need to rely on other means.  Of course, there are our cell phones, computers and such, but from experience, the lack of remembering that these are also sources of time seems to be a fleeting idea from one’s mind. 

However strange these events are, there was an abrupt change that happened when a nurse walked into the room as said my daughter name.  For a flicker of a moment, the world stopped and my mind went into overdrive.  Is she ok? Does this mean that she is done? Is there something wrong? How long has it been? All these and many more were the questions asked in my mind, and from my mouth a dry voice uttered, “I am her father”.  That was all I could say, those were the words that my mouth chose to shape from all of the ones coming from my heart and mind.  My stomach turning over and over like a trapeze act as I stood and the nurse walked towards me.  “Your daughter did great and I am here to take you guys up to the PICU to see her”.  My heart, the one that was shattered into a million pieces, the pieces that I thought were left in that prep room so barren, empty and what seemed like ages before, swelled and came alive.  Excitement flooded my veins and tears started to collect in the corner of my eyes, tears of elation.  But, from the previous experiences I knew better than to break the floodgates at this point.

There is a nervous chatter that becomes an elevator full of people on their way to see a child after surgery.  Jokes are made, and by some force everyone finds them funny.  In all reality, they are not funny, they are obscure and pointless.  But, there is a need for the soul to laugh, to find some peace in the transition that this elevator ride physically symbolized.  The, we were led to yet another waiting room.  Though not nearly as long as the wait before, just as tense.  In the few minutes that seemed like hours, the rush of emotions was more than exhausting.  Then, a door opened, behind it stood one of our daughter’s surgeons; with a tired smile she greeted us.  She told us what all happened, and what all was done.  She talks about the process we are getting ready to being, the long journey of recovery.  This journey is driven not by time, not by the doctors, not by us, but by our daughter.  Nervously my wife and I held hands as we were lead to her room.  A white knuckled grip of searching for the rock that is our spouse, yet assuring that we are there to be the rock we have been for each other all along. 

Now, I mentioned that the prep room being empty is the worst place in the entire experience.  Now, let me describe the second best place.

The door opens to a darkened room, the constant hum of monitors and medical machines all letting us hear and see that our daughter is there, and doing well.  There is a complete peace and stillness that counters that ones from before, that pours out of the room.  There, on a bed, still, quiet and sleeping lays my world.  In a single stride I am by her side, reaching for a hand, foot, face, any part of her.  The moment that my hand finds hers, the floodgates are opened.  The tears that I have been holding back for hours pour forth with an undulation of joy.   The warmth from the little hand inside of mine surging like a bold of lighting from the curls of my fingers to the center of my heart.  My soul beings to sing, a smile erupts like a chasm though my once sullen face.  I watch as she takes a breath and become infinitely aware that I am breathing as well.  It is not that I held my breath for the last eight hours, but that the breath is different.  It is not labored, it is free.  I see the new cut on top of her old scar, and I am not scared or afraid.  I have come to love that scar, for it will forever be a mark of my daughter strength.  Of all that she has and will continue to endure.  It is the mark that reflects upon my heart, in a truly positive way.  In this moment, in this space, my family is whole, and my amazing cranio kid sleeps.

Over the course of the seven and a half hours my daughter was mildly sedated for a CT scan.  She was then fully sedate and moved into the operating room. Due to the nature of her case there were around 15 people in this room.  Think about that for a second.  Television has done a great job of bringing the things that once were behind closed doors out to the world.  Many times, the operating room has five or so people in it.  For this sweet little girl, for this procedure, there were 15.  They placed tubes in both of her ears, draining the large amount of fluid that was contained there.  A good amount of time was spent time moving my daughter’s hair out of the way from the scar of the previous incision that remained from the surgery in December.  Then, her very skilled and amazing doctor cut along the scar, making sure that she did not cut any of her hair.  Ignoring the gory details at this point a cut was mad in my daughter skull and two distractors were placed (one on the left and one on the right).  Arms were attached to the distractors and holes were made in the skin for them to poke out of.  Some work was done on another part of her skull (a conversation for later) and then she was patched up.  Though it does not sound like a lot of work, think of the exactness that needed to be done. Bear in mind that they were cutting into the skull of a child whose brain was running out of space to grow.

We have been given a screwdriver styled device that matches up with the arms on the distractors.  We will be turning the arms one full turn, three times a day, for the coming weeks.  It has been strongly recommended that we precede these events with a dose of Tylenol. This process will case the opening that was made in her skull to be opened more in more, in very small increments, in prep for her next surgery in a few months.

The amount of support that we have received has been fantastic.  My father came in from Indianapolis and spent MANY hours with us each day until she went home.  My mom and dear friend of the family were there to support us during the surgery.  Last, but not least, Zoey’s Oma came and visited often.  She also provided transportation for my beloved bride to and from her beautiful home mere minutes from the hospital where my wife was able to go, shower and sleep on a bed.  The doctors and nurses in the PICU are all so amazing.   The love that they have for the patients and their support of the families of the children is unfathomable. 

Now we are home, and as I described in the opening of this update, that, my dear readers, is the best place to be.  Even though we face a recovery that will be full of meetings with doctors, turning the distractors, and all that is entailed.  There is nothing better than hearing the gentle blowing fall breeze, the raindrops cascading through the turning leave of the trees, the distant sound of the washer and dryer working; all is grey, quiet and calm.  My beloved bride and daughter have been asleep for a bit, but I am hearing some rustling.  There is a gentle babble of my daughter echoing softly down the hallway meeting my ears… and filling my heart.

I AM A CRANIO DAD, I am scared out of my mind, and we are so very happy to be home.