Thursday, October 25, 2012

"Dangerous Curves Ahead" -- A dad of a girl going through adolescent idiopathic scoliosis surgery tells his story.

We received the story below from Laney's dad today describing their daughter's journey through scoliosis surgery with us.  Laney and her family would like me to share with all of you on the blog.  Laney is a 14 yo young lady with adolescent idiopathic scoliosis who had surgery with me at Duke Raleigh Hospital on October 1 2012 --- 24 days ago -- and is now back to school. I have edited out Laney and Tony's last name for their confidentiality, and also removed the name of the other surgeon.  I left everything else in his story, including the part in there where Tony describes me (Dr. Hey) as a "Scoliosis Geek" (No one's perfect, and as an MIT grad, I've been called a "Geek" before!)  This is a real story from a real scoliosis dad that explains the journey through surgical decision-making, surgery and recovery from a loving parent's perspective.  

--   Dr. Lloyd Hey --- Hey Clinic for Scoliosis and Spine Surgery.

From: Tony  <tony@>
Date: Thu, 25 Oct 2012 09:45:08 -0400
To: Tracy - Hey Clinic
Subject: A story about going thru the process of healing Laney...

I found writing stuff down about these sorts of events really helps me put my thoughts together...  

Thought you might like it - get a feel for the sort of difference you, Dr Hey and everyone there have made in our lives.

Thanks so much --


Danger – curves ahead.
(by Tony C -- Adolescent Scoliosis Dad -- October 25 2012)

So - the clearest moment in all this was about four months ago in Boston.  I was working on a video for a new client within IBM and I was really wanting to make this project solid.  Literally 5 minutes before I sat down to run the main interview I got a call from Laney’s doctor.  “Mr. C___…  I don’t know how to make this easy.  I looked at her x-rays and her scoliosis is far more severe than I had hoped.  Corrective operations for this usually happen when the spinal curve is at least 45 degrees.  Laney’s is far beyond that.  It’s around 60 degrees.”

Laney, my 14 year old daughter, has scoliosis, a major childhood illness, and she will be having corrective spinal surgery. 

That’s what echoed thru my head during the following 30-minute interview, while finishing the rest of the shooting that day, while sitting alone in the airport waiting for my flight home to Raleigh.   In those hours, Laney became frail and helpless.  I imagined her pain increasing with every minute I was away.  By the time I had picked up my suitcase from baggage claim, I was sure that she was in absolute misery and distress.  I came home to a very typical night.  Dinner was ready to be reheated, Logan (my 9 yr old) was doing her homework with Susan, and Laney was in the office – watching weird youtube clips on the computer and texting with her friends.  “Hi there!”  “hi”  “Good day today?”  “yea”  “Whatcha doing?”  “nuthin”  She still had the teenage disconnected attitude.  She was still the girl I left several days ago.  No pain, no weakness.  No change.

I found being around her to be the most reassuring thing I could do for the 4 months leading up to her surgery.  It’s so easy to assume the worst and magnify the issues in a parent’s mind.  This is one of those worst-case scenarios that came true, and it messes with your mind around the clock.  Being around my family also helped balance out all the stuff I was reading online.  There’s a wealth of truth, lies and exaggerations online, but all of it can seem so real – and unfortunately, I think it’s human nature to be drawn towards to worst…  towards the most extreme.   I found images online that looked almost like Ripley’s Believe-it-or-not wax statues, x-rays of bizarrely twisted spines… and then I would see Laney coming downstairs for dinner.  I could never connect the two, but my anxiety grew daily.

We visited 2 doctors to determine who would be best for us.  As a friend told me: “ This is a bad thing, but it’s got to feel better knowing you are living in the absolute best place in the country for medical attention.”  He was right.  This part of North Carolina is home to the most amazing collection of top-of-their-field medical experts – including Dr. _____ and Dr. Hey.  Dr. _____ was our first doctor.  His track record was truly amazing, but he was cold and aloof.  Not much interest in our concerns or need for information.  Dr. Hey, who was also personally recommended by a neighbor, was something a dream-come-true.

Dr. Hey spent almost 90 minutes talking with us, but he mostly talked directly to Laney.  He knew we had concerns, but he also knew that it was Laney who going thru this operation and recovery.  He was slightly awkward, had a very sincere interest in Laney and is a scoliosis geek!  (I mean that in the most endearing way possible.)  All he does is scoliosis corrections – to the tune of 5 or so a week.  He is also a deeply religious man…  respectful to people’s differing beliefs, but very solid in his own.  There’s something very settling in knowing the man who will operate on your child has a deep-held “work of God” ethic with every person he heals.  There was no question who we were going to go with.

However, there’s also a profoundly scarring process of listening to your 14-yr-old daughter talking with her doctor about the survivability odds of her upcoming operation…  the number of people/ her chances of becoming permanently paralyzed regardless of the doctor’s best intentions.  1 in 7000 die.  1 in 1500 paralyzed.  Are there any odds you would be comfortable with regarding your child?  Dr. Hey was very reassuring, but he was honest and very straightforward.  He was not going to soft pedal around the realities with Laney – he knew she deserved to know everything she was going to face.

She was so amazingly strong during that conversation.  I found myself wondering if she was in shock or if maybe she just missed some of the more fearful aspects.  She didn’t, she knew what she had been told.  She just accepted it and decided  to move forward.   Once in a while you get the idea that maybe, just maybe, you raised your child right… that your child has far more depth than you thought.

The next few months were an odd assortment of fear, anticipation and forgetfulness.  Laney started High School.  We took the family to New York City for a vacation, as well as a trip to Southport, NC.  Sometimes one of us would feel overwhelmed by the upcoming surgery and all of it’s unknowns, but mostly, the operation just slipped into the background.  I kind of felt the way I did in the middle of each of Susan’s pregnancies.  That odd point between 4 months and 8 months, where you don’t really forget, but you just kind of move along without really thinking about it so much.  I did notice that I was sending a lot more texts to Laney during the day, just to check in and say hi…

Susan did mention to me, a day or two before the surgery, of a conversation she and Laney had about her surgery.  We had tried to talk to Laney whenever it felt right, and this occurred when Laney and Susan were standing in the kitchen one afternoon.  Susan had just talked a little, trying to understand Laney’s quiet mood.  She asked if there was anything she feared.  Laney thought for a second and said: “I’m afraid I’ll die.”  Pause.  Then she smiled like she was just kind of kidding.  Does it really matter if she was joking?  How the hell do you face those words if you’re a parent?  (We did prod a bit after that, but Laney really did seem to accept and be OK with the decision of surgery.)

And then the day for surgery arrived.  4:15am Monday Oct. 1st.

I think they get you to the hospital so early because being half awake has kind of a dulling affect.  Susan’s parents spent the night at our house so they could get Logan up and off to school.  Laney, Susan and I stumbled into our clothes, got into the car.  A 30-minute drive and we were at the hospital.  There, we sat for almost an hour waiting on the process to begin.  I had no idea what to do.  Susan seemed OK.  Laney seemed kind of bored.  We all just sort of waited for the pager/buzzer thing they gave us to go off.

The little buzzer/pager they gave us went off…  and we all went thru the double doors and down to room #11.  What we were getting ready for was very real, but we went thru the whole process on auto-pilot.  Laney got into her hospital gown, Susan made sure Laney wasn’t wearing any jewelry…  we both kept making sure Laney was OK.  One nurse after another came in to do something…enter info on the computer…  basically, 45 minutes of little things.  Then the nurse came in to put in Laney’s IV and take some blood.  I don’t think Laney had been expecting this, and she seriously hates shots.  This was too much for her.  She broke down crying…  Susan tried to hold back tears and pretend it was all just typical stuff…  I can’t remember what I was doing except I know I felt like I was slowly coming apart at the seams. 

I breathed deeply, tried my absolute best to put on a brave face…  Susan and I took turns holding Laney’s shaking hands…  the nurse came with some happy juice to make Laney relax.  It worked quickly.  One fear I had was when it was brought up that we could just back out of this and go home.  I don’t think it was explicitly said, but the idea was just kind of there.  Laney never considered it.  Once she was calm, things moved pretty quickly.  Dr. Hey came in – gave us a quick update, and then said a quick prayer.  I’ve always felt kind of distant from religion – but in this case, I wanted to make sure Dr. Hey knew we were all in this together…  and I figured it couldn’t hurt.  It was also a very short but very real moment together.  That felt good.  He then asked Laney, “does she want just a little bit of correction or the most correction he could possibly give her?”  She obviously went for the most possible.  To me, it was an odd question, but it kind of goes to the heart of the way Dr. Hey really communicated first and foremost with Laney.  It would always be her choice, so that was what he was going to do.

And then Susan and I did the hardest thing we have ever had to do.  We walked back down the hall into the waiting room, leaving Laney alone with the nurses on her way to surgery.  We did it because it was what they told us to do – and it was what we knew we needed to do, but everything inside me was screaming to run back to Laney.  How the hell can someone’s dad just walk away while their kid faces such danger?  My insides were going nuts, but I just tried to breathe and look normal…  I think Susan was doing the exact same thing.  I remember looking at her while we were walking down the hall and we both just sort of mentally said to each other “what the hell else are we suppose to do?”  So, we ended up in the waiting room…  waiting.

The nurse had my cell number and promised to call about every hour and give us an update.  Susan and I waited in the waiting room for a bit, but got very tired of that area, so we went down the hall to the cafeteria and thought about getting something to eat.  Neither of us were hungry, but my stomach was starting to feel torn up from all of coffee, nerves and no food – so I ate.  The cafeteria was a much better place to hang out…  warmer colors, a large fish tank, far fewer anxious people.  So we hung out there and pretended not to look at the clock.

The nurse called us at 8:25am to tell us that the surgery was starting.  Wow, it took them almost an hour to just get started.  She said she’d call us back in about an hour to let us know how things were going.  It’s difficult to explain how slowly time moved.  I knew in my mind what was happening now to Laney – Dr. Hey was opening up her back, twisting her spine and ribs back into normal alignment, implanting the titanium rods…  but that’s not something I could really get my head around, nor did I want to.  I also knew when the nurse would be calling, so Susan and I just did whatever we could to wait out the time.  I had loaded a lot of games onto my iPhone to help with this time…  I knew it was coming, but the only game I had the mental capacity to play was Yatzee. 

The nurse called with very good news – things were going very well, and the doctor already had 70% of the hardware in place.  Wow! Hardware in place.  I guess it’s a trick your mind plays to help minimize the intensity of what you face and I knew that there was hardware involved with Laney’s corrections, but damn!  70% of hardware in place…  OK, that’s one of the most messed up things I’ve ever heard.  The good news was the no-bad-news in that call.  I kind of figured that if there were difficulties with the procedure the bad news would most likely happen early on.  I will never be able to explain how that first phone call changed everything in my mind.  Fear, death, paralysis – they all started feeling like irrational worries and were being replaced by the simple worries of the drama of recovery and getting Laney back up to speed in school.

Another hour slowly passed, another call with the nurse – everything went extremely well and the doctor would call us back soon to go over everything.  I was really starting to feel OK about everything.  There were strange residual fears and since it wasn’t completely done, there were still things that could go wrong…  but there was light at the end of this tunnel.  A few minutes later, our pager went off again and we walked back to the surgical waiting room – and immediately we taken back to the little conference room.  The nurse who met us there told us that Dr. Hey would be out shortly and that everything went very well.

Dr. Hey got there about 5 minutes later.  He was very serious, but happy.  He told us that everything went well and that since we had asked for the best correction possible…  “Taa Daa!”  He pulled out an x-ray of Laney’s corrected spine.  Almost absolutely perfect. 

Susan immediately started crying and gave Dr. Hey a hug.  Dr. Hey shook my hand and then left.  The next thing I knew, I was hugging Susan and crying my freakin’ eyes out.  I was shaking uncontrollably with sobs and jerks.  I have no idea how long that lasted – I think it may have only been a minute or so, but it was the most intense relief I have ever experienced.  I cut it short because it actually hurt…  and I kind of freaked myself out a little.

It’s amazing how big of a mental damn you can build without ever knowing it.  I had been feeling maybe 5% of the emotion I went thru each day – storing it all up to deal with later.  I had expected bad things… I had expected failure with the best intensions.  Success was oddly unexpected and the damn broke completely.

And then Susan and I held hands and went back to the waiting room until they assigned a room to Laney.  I can’t imagine what others in the waiting room thought we had just gone thru.  We both looked a wreck. 

We met a guy close to our own age – his wife was having lower back surgery due to an accident at work.  We had an immediate connecting to him and had a good conversation for a while.  Then, for some reason, we found him talking about politics – and he was obviously far different from us.  I immediately found something to do on my phone…  I’m usually a political junkie, but there was no way I was going to spoil my good mood with such pointless crap.  Susan had some pent up frustrations that needed a place to go.  She was nice and I missed a good bit of that conversation, but when I next looked up, our conservative friend was sitting way back in his seat with a the smile of man trying to reason with a grizzly bear.  That’s when we heard our name called for room assignment – everyone seemed relieved to part ways.

It was such a relief to have a place to settle into – room 3226.  The room was obviously empty without the bed, but it was a place we could call our own for a bit.  So, we waited… again… to see Laney.

As Laney was wheeled into the room, I was thrilled to see her and say hi…  and tried as best I could to ignore everything attached to her.  She weakly smiled with her eyes partially open and waved to me slightly with 2 fingers… and immediately fell back to sleep… the sweetest ‘hello’ imaginable.  In 5 minutes of activity, everyone set up whatever was needed to be set up and then left us alone in the room together.  I touched Laney’s arm and tried to take it all in.  On one hand she had multiple IV tubes.  She also had a catheter... I talk with Laney about the catheter but Susan did – but who knows what Laney actually would think about this when she was more awake.

Pale from the loss of blood, unconscious from the anesthesia, tubes feeding her drugs and fluids…  I wasn’t sad – and I can’t quite put my feelings into words.  This is the state we elected to put her into.  We were lucky, our doctor was skilled, and Laney was cured.  Now, the long road of recovery.

The high point – Laney and I had gone searching for a Tigger Pillowpet many times over the summer, but to no avail.  No one had one in stock.  Uncle Stephan saw one in Wal-Mart and thought she’d like it (he had no idea it was the one thing she had been wanting – but he knew she loved Tigger from the prior Christmas)  Way to go Stephen!  (Sorry Sara.  I know Laney really loves the bumble bee Pillowpet you got her, but Tigger will always go to Laney’s heart.)

What’s it like to see x-rays of the (2) foot long titanium rods and brackets attached to your daughter’s spine?  To see the 14 inch incision all the way down her back?  To watch her lay frozen - perfectly still in bed and whimper from the excruciating pain despite all the drugs?  Or to watch her take her first steps?  (The nurse thought Laney would just walk to the door of her room and back to bed  but Laney walked the full length of the hallway, twice, with surprising ease!)  Did I mention that she grew 3 inches in as many hours from the surgery?!?  They also had to rotate her ribs 3 inches to get them back to normal…  and Laney’s chest is at best 4 inches deep.

We had planned on Laney coming home Wednesday afternoon, but conversations quickly became about maybe Thursday but probably Friday.  Dr. Hey had to do so much work to get Laney’s spine and ribs back to normal, and that sort of work has a cost.  Tuesday night, during a point when the drugs weren’t enough, Laney simply cried that all she wanted was to go home and sleep in her own bed.  The nurse mentioned that if she could work hard on her mobility, she might get to go home earlier.  The next day Laney walked the hallways twice, did the rehab ‘obstacle course’ of steps and in/out of a car test in 5 minutes flat.  This is Laney leaving for home Wednesday afternoon at 3pm.

Home s a great to place to get better.  Everything is here, and you can actually sleep uninterrupted.  Well, OK, Laney can sleep uninterrupted – we still have to get up and get her medicine every few hours.  One thing we learned when Laney and Logan had their tonsils removed: do NOT let the pain get ahead of the medicine or life will really suck.  I had to download a medicine app for my phone so I can track all the different pills she needs to take at different times.  There are still a few times when her pain overwhelms her, but she’s making a truly remarkable recovery. 

On Friday, Laney started sitting up and reading…  watching TV, or just to stretch.  His was the last of the big things to get back into doing, and by far the most painful.  Think about what happens to your spine when you sit.  Now imagine rivets and rods attached to your spine to keep it straight.  I think boredom is a really motivator for teenagers.  Laney is tired of laying down, and of course there’s only so much room to walk around in our house.  I’ve also notice that distant, rolling-of-the-eyes attitude creeping it’s way back into our home.  Laney still wants hugs, and says “I Love You” and “Good night” to us, but I expect that to end any day now. 

It’s now been 5 days of recovery,  and from the highs and lows experienced , I feel oddly calm.  I remember talking with friends whose daughter had surgery for cancer at the age of 6 months.  They said it took far longer to actually come to grips that their daughter was cured than it took for the initial realization that she had cancer.  All my worst fears surfaced during the past 4 months, and with obnoxious regularity.  I avoided as many quiet times as I could… tried to stay busy and focused on anything else.  There’s a saying about bad things around the office: “Well, at least is isn’t your baby.”  Well, this time it was my baby and I learned that you can fake being clam, put on a brave face, make rational decisions, but you can’t hide from real world harm to your child. 

I’ve always been good at counting my blessings…my life has been amazingly good, I’m surrounded by sincere and good-hearted people and my family is an absolute bedrock.  However, I’ve always felt that this life was held together by a very thin, frail bubble, and this whole event felt like what I had always imagined that bubble popping would feel.  Fear, chaos and the worst of what is possible.  What I discovered was a very thick wall of love and support that I have from friends, family and work-family.  My life, like my daughter, is nowhere near as fragile as I had thought.

Tony C -- October 25, 2012

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