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
So, Kayla just grew up, but as she got to be in her later teens began to develop severe low back pain, and a very obvious severe deformity.
We then saw her and her mom at Hey Clinic. Her curve measured around 124 degrees and she had severe collapse. Pulmonary function tests showed that the scoliosis was definitely having a large effect on her pulmonary capacity. The MRI showed the severe deformity but no spinal cord abnormalities.
