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The Two Million Dollar Smile

Hi!  My name is Jordan.  I wear my smile proudly.  People tell me my smile is contagious.  I live every day to the fullest, making the most of it.  
Almost everyone I meet smiles with me.  Smiling is the thing that I do best.  Let me tell you how I got my smile.

Nine Octobers ago, my Mom’s water broke on a Wednesday night. She didn’t tell anyone.  By Friday night, I was ready to come out.  We were
flown to NOVA.  Being so early in the pregnancy, the doctors tried to keep me from coming out.  But even then, I had a mind of my own.  I was
born on November 4, 1996.

I was born at 24 weeks gestation.  Only 24 out of 40 weeks, that’s just a little out half done!  Have you ever seen a sonogram?  You see the
outline of the face, but the face isn’t there yet.  That’s how I was born.  My eyes, nose and mouth still had skin over them, still fused closed.  The
doctors put patches over my eyes, to protect them from the light.  My nose holes were clipped and as well as mouth so that they could put tubes
in them.  As for the rest of me, I had ten toes and ten fingers.  My heart had not  finished growing yet, nor had my lungs.  But the real problem
was my brain.  My brain had not finished developing. Our heart and our brain are similar in that they both contain four chambers.  My brain had
five chambers filled with blood.  In addition to being premature, I was also diagnosed with grade 4 multi-compartmental hydrocephalus with
bleeds, which means that my brain and spinal column don’t work as they should.

A feed peg was placed in my stomach.

I had shunts put in at 7 months of age.  During the shunt procedure, my bowel was cut; hence ecoli bacterial spinal meningitis had set in.  As a
result of the meningitis, I became blind, lethargic, no reflexes and got peritonitis.  I was all but dead.  I had the meningitis from May 15 until July
12 (Mom’s Birthday).  A normal person lives only a few days with meningitis, but because my brain and spine didn’t work, I lingered on.  After
enough noise from my family, I was able to get the neurosurgeon off the golf course to remove the shunts.  The shunts were replaced!

At 11 months old, the shunts were infected again.  This time I was taken to Children’s Hospital.  Here their neurosurgeon removed all the
shunts, scrapped my ventricles and replaced the shunts with external bags for monitoring.  During the scrapping of my ventricles, I had a
stroke.  This is noted on my left side.  Infection cleared up and shunts were replaced.  I went home.

My vision came back with great detail.

During one of my checkups, I was diagnosed with precocious puberty.  I get a hormone shot monthly.  I also have scoliosis.

December 2002, I went to Morgantown.  There I learned to eat with out depending on the feed peg so much.  As many of you can see, today I
eat anything, but I am still unable to swallow liquids.

On February 12, 2002, I had a seizure.  The seizure lasted over an hour and would have continued had it not been for the medicine at the
emergency room.  On February 15, it started to snow and snow and snow.  My appointment with the neurosurgeon was on Monday.  Due to the
2 foot plus of snow, no doctors could get in to the Children’s Hospital.  I was very fortunate that a neurosurgeon had gotten snowed in.  Through
an x-ray, we were able to tell that the drain tube had separated from the shunt causing a fluid build up.  This was corrected the next day.

I had a seizure on Christmas Eve 2004.  I was Medi-Vac’ed to Children’s Hospital.  By the time I got there the Doctors had gone home for
Christmas.  I was sent home with no follow-up care.  

Getting ready for Easter Sunday, my Grandma noticed a hole I my head, an old incision was reopening.  After the examination, the doctors
noticed that my shunts had not been working for a while.  We decided to take the shunts out, to clear up the infection and to see how I do.  Well,
for a couple of weeks I was okay.  But then my cerebral fluid started absorbing into my brain.  For most people trans-impermeable fluid means
a coma or death, but not me, I just continued to smile and confuse the specialists.  So, shunts needed to go back in, but where to put them was
the question.  There are so many holes in my brain that there is concern of permanent damage.  So a few more holes were drilled in to my skull
and brain, and I woke up after surgery SMILING!

To date, all is going well, just routine doctor appointments and follow-ups.

My family takes very good care of me and includes me in everything they do.  I have been on a boat and in a plane.  I have toured through NY,
NH, VT, ME and MA before retuning home.  I crossed Lake Champlain on a ferry, ate ice cream at Ben and Jerry’s, saw the Anheuser Busch
Clydesdales, had my picture taken on the beach in ME and saw the Salem witch statue in MA.   I have been to the Crayola Factory and Dutch
Wonderland.  I attend TA Lowery and go to all my school field trips.  I have been taking therapeutic riding lessons and therapeutic swimming
lessons.  

Last year was my first year in 4-H.  It was a big year for me.  I participated in the WV State Fair and the Special Lamb project.  I met lots of great
people, smiling people!

This summer, I have competed in several horse shows.  And I loved every minute of it.

Smiling is what I do best.  I figure if you had to add up all my doctor bills, you’re looking at a two million dollar smile!

Another milestone in Jordan's life . . . . .

6/21/10 5:30am arrived at Ruby Memorial hospital
     As of 8am, Miss Jordan was stingy with her blood.  The techs couldn’t get a line started, so they took her on to OR.  There was a change of
anesthesiologist, to a pediatric anesthesiologist.  They used gas to get the IV lines started.
Surgery seemed pretty routine.  She was 5 hours into it the scoliosis surgery when her heart stopped.  There was about 15 minutes to close up
her back and flip her over to start compressions, even a shock was needed.  (The hardware is in place, but bone graphs are needed, was well
as sutures.)
(It was about 1:30 when we were taken the to Chaplin’s room to learn the news of Jordan.
This is the longest surgery and the longest time she has spent away from any one of us.  It was almost 4pm before we were able to see her.)
Once Jordan was resuscitated, she was taken to the PICU floor.  She is being kept sedated.  Her body temperature is being dropped to 93
degrees by two cooling blankets.  She is hooked up with 4 IV’s.  She received platelets, plasma, calcium and lots of saline fluids. She has
some compression leggings on.  The doctors will attempt to wake her up after lunch tomorrow.  So, it’s a long night’s wait to see if Jordan is
the same sweet Jordan!!

6/22/10 Miss Jordan continues with her meds: dopamine, fontanel, vancomycin and gentamycin.
There are two theories on why her heart stopped.  One is due to the over exposure of bone and tissue from the long surgery, air got into her
blood stream causing a hiccup at her heart.  The other theory . . . .  The echocardiogram should something called q-t rhythm. At any rate she will
be given a beta blocker before surgery tomorrow.

Pain and sedation meds were stopped around 10am, in hopes that she would open her eyes and be fussy.  But as of 12:30, she has only
fluttered her eyes with minimal hand movement.  She tries to look in the direction of our voices, Shrek and her rattle toy, but quickly retreats back
to the pillow.

She will continue with all her meds and vent until after surgery tomorrow.  Hopefully after surgery she can be weaned from the ventilator.

In addition to all these ‘extras’, we worry with the added risk of infection from the quick close of surgery.

Prior to the start of surgery, Jordan had touched much of the OR staff with her smiles, finger points and fake sneezes.  She has a long following
of doctors and staff.

The wait is long, but all your prayers and wishes are much appreciated.  Many tears have been shed the last 24 hours, but we take great
comfort from the love of family and friends.


6/23/10  Ms Jordan is scheduled to complete her back surgery at 1pm today.  Dr France will go back in to flush the wound, graph bone and
close.

Let’s see . . ..  I feel better with the anesthesiologist theory on Jordan’s cardiac arrest.  In his opinion, with Jordan’s small body, coupled with
her tiny, tiny vessels, she could not with stain and endure the amount of pressure from spinal rod surgery.  This was done, of course, face
down.  Jordan has never been on her belly for any amount of time to speak of.  (Ms Annette Mason can vouch for that!!)  

As standard protocol, a cardiac arrest child should be cooled for 24 hours after the event, then slowly increase body temperature.  This is to
hopefully allow minimal neurological
side effects. (That’s also why the leg pressure cuffs are added, to aid in circulation.)

She has a low fever, as she continues with her antibiotics: vancomycin and gentamycin.

Jordan has been taken off the dopamine, a blood pressure medication.  

Jordan has been getting lasix to remove the fluid that they are giving her.  It will continue to be a give and take battle. (Lasix drops her blood
pressure)

She is also on very low doses of versed and fentanyl for pain and sedation.  About 9am, she opened her eyes wide.  I asked to raise her hands
up and she tried very hard!!

Propranolol is being administers as the beta blocker for her heart, prior to surgery.  Propranolol also drops her blood pressure.

Jordan was given a unit of blood last night for two reasons: to help with blood pressure and to replace what she has bled out from her incision.

Lungs are clear.

Bowels are full!!  She looks like her Pap (Wayne), a very distended belly!!

The nurses and doctors have been great.  Jordan’s fan club has grown!
Although, the nurses on the PICU floor have not yet met Jordan or seen her contagious smile.  I have been showing her pictures on the laptop,
so they are anxious to see her smile and hear her laugh.

Thank you for your notes and continued prayers.  I am reading all your notes aloud to Jordan.


This afternoon a multi-car accident bumped Jordan from her scheduled surgery time.  She was taken down to surgery at 3:15pm.  The original
anesthesiologist requested to sedate Jordan.  He had his team prepped and prepared for worst case scenario as well as Dr France’s team.  
Miss Jordan was placed on her tummy.  Her incision was cleaned and flushed.  The bone graph was added and stitches/sutures were put in
place.  There are two drains in her back that will stay in for two days.  Everything went like clockwork—a well oiled machine.  The balance of the
original procedure took less that 45minutes.  

Miss Jordan has touched Dr Andrew, anesthesiologist, so deeply that he shared a personal family story with us.  Monday night, Dr Andrew took
an extra minute to tell his four year daughter how much he loved and appreciated her.  She asks why daddy was so sad.  He told her that he
was worried about a special little girl at work.  So that night at bedside prayers, his daughter said a special prayer for daddy’s new special
friend.  At this time, we were all sharing tears of joy for Jordan successful completion of her back surgery.

She has been removed from the verset and fentanyl.  She is now getting precedex- a lighter sedation with less withdrawal period.

She is still on the ventilator for tonight.  Hopefully, she will be weaned from it tomorrow.

She continues the antibiotics: vanc and genta.

We are in anticipation of seeing her beautiful brown eyes!!  

6/24/10  As of 10:30am, Miss Jordan is breathing on her own.  Tubes are out of her mouth and throat.  We are still waiting on a smile.  
By using the precedex pain medicine, she is a bit more alert.  We are seeing her big brown eyes more and more frequent.  Eye contact feels
like stolen moments from her much need sleep, but we’ll take what she gives us.

Given the amount emails, texts and phone calls, Miss Jordan has touched and won the hearts of many.  If love could be measured, Jordan
must be the wealthiest person I know.

Your prayers, words of comfort and offers to help, have been received in awl.  We are blessed to have some many wonderful friends and family.


6/24/10 Afternoon was a great afternoon ... central line was removed from her groin and the other IV was removed from her hand.  (We did put a
new on in her upper arm.)

Jordan was removed from the precedex.  She has been pain medicine free for 12 hours.
(I feel that there is still residual from the first meds!)

Catherder is out.

She did have her first bite of vanilla wafer.  She ate it so quickly and with such lust, that she pulled the pulse-ox sensor off her thumb.  Her
mouth had a red glow!!!
The vanilla wafer was premature, she did inhale it literally . . .  into her lungs.  We had to suction it out!!

We are elevating her head more, along with her heart rate.

Miss Jordan has a ‘working’ fever . . . . 99 .. ..99.5  . . . . 100 . . . 100.5 . .. .up to 101.5
We are giving her last genta, then will watch and culture for infection.

Her back drains were pulled out early this morning.

SHE DID EAT A CINNAMON POP TART FOR BREAKFAST!!

Ms Jordan is showing the snootie face and only partial smiles.  BUT, cogentively, we are back to where we started on Monday 8am.  

She is not moving her legs yet, however, she has toe movement.


On Friday evening, Jordan left ICU and was sent out on the pediatric floor.  Her nurse had five other patients.  Jordan was having an allergic
reaction to her vanc.  At the IV sight, there was a lot of swelling and hives.  This went undetected as we had to ‘sleeve’ the IV sight, because Ms
Jordan had pulled one out already.  Once the vanc was stopped, her fever dropped.  
Saturday’s morning’s x-ray came back.  Her right lung is clear.
She still needs to poop.

Sunday morning, the nurse tried to give her a dose of genta.  And the vein was not cooperating.  The cultures should be ready to check at 12:30,
so we held off on meds until 12:30.  The cultures did not grow anything!

SO, with that the pediatric doctor said that if we kept up the same level of care, she could go home.  We waited until 4pm for the discharges
papers.  We were packed up and waiting!!  Home we came!

Miss Jordan is still very sore, especially her right leg/hip. She is happy to be home.  Her days and nights are backwards, but that can be fixed!!

Again, we would like to extend a warm and heartfelt ‘thank you’ for all your prayers.  You’ll never know how much you mean to us!
Jordan's Aunt Margaret has been involved in 4-H all of her life.  
She wanted to make sure that Jordan had that same
opportunity, so Margaret started a group that combined her love
of horses and children, all children.  Saddles and Smiles 4-H
group allows children to reap the benefits of working with and
learning from horses and each other.
This is Jordan's story...