VANESSA WOOTEN
I was born in January 1973, grew up in a humble, Christian
home. I lived in the country with my mom, dad,
my grandma (dad's mother) and my younger brother.
Our home was on 4 acres in the country.
We raised chickens, rabbits and cats. We tended a large
vegetable garden with many fruit & pecan trees.
My dad, a self-employed CPA, had his office
next door to our home. We worshiped at a Baptist church
where my parents taught children’s Sunday school classes,
and my mom worked as church financial secretary.
I was SAVED and baptized when I was 9 years old.
I did well in school, participating in the Zenith program
and Advanced Honors classes. I was editor of my school
yearbook my senior year. And, I earned a full scholarship
to a junior college, where I studied journalism and
aspired to be a talk show hostess.
In an accident on the way to class, I burned my right arm.
I dropped out of college a while. I took a few classes
later and interned at our local CBS affiliate, KOSA TV
where I went on to become producer then assignment editor.
9 years later, I felt God was calling me for a change,
and I accepted an offer at the Permian Basin Rehabilitation Center
to work in medical records and patient intake.
I became a mother and wife in 1994 when I married a
widower. James lost his first wife in a car accident
just before their daughter, Steffany turned a year old.
My family and I knew his wife when she was a girl
in our church. We all felt an instant connection.
Our son, Joshua came along in 1996.
In 2004 my husband’s employer transferred him about a 5
hour drive away from our families and hometown. We sold
our house and moved away from our familiar settings.
I took the summer to settle our new home. By the time
I started to look for a new job in the new city, a 24-hour
local news station disbanded, flooding the market with
news professionals. So, I found work with a small
business specializing in Flexible Spending Accounts
(Cafeteria Plans).
A few months after the move, our son, Joshua - who had
been healthy all his life - suddenly collapsed and went
into respiratory arrest. We nearly lost him. It took
months for doctors to find the cause of his collapse.
He has a very rare & serious disorder that causes his
breathing to be too shallow, stops his body from making
growth hormones or properly regulating his body
temperature or hydration. It has left him with a trach
tube in his neck so a ventilator can breathe for him.
He also needs daily growth hormone injections and other
medications. What's more, doctors say there is no known
cure for this disorder.
With Joshua's need for all of this new specialized
medical care, and nobody else to provide most of it,
I am no longer able to hold a regular full-time job.
I now change Josh's trachs, monitor his machines and
vital signs, give him shots and medicines, train and
manage his nurses, order his medical supplies and handle
the mountains of paperwork associated with his medical
care. Of course, I also care for the rest of my family,
doing the cooking, cleaning, paying the bills, etc.
On Wednesday nights, I help teach an AWANA class.
And, I take care of the elderly parents of a fellow
church member in their home weekdays
(Josh comes with me
when he's not in school).
Because Joshua's disorder is so rare
(only 25 cases known in the world)
there was a big write-up in
the San Antonio Express News.
That article even led to
an hour-long documentary
being made about Joshua and
the onset of this disorder.
It was shown on Discovery
Channel and Discovery Health Channel.
Life or Death
Battling to Breathe
Sun, Mar 2nd 4PM (Central)
Eight year-old Joshua Wooten is a real mystery.
When his mom takes him to the ER after finding him
collapsed on the floor, doctors discover his blood oxygen
level is just half of what it should be. And yet he shows
no obvious signs of disease.
Want To See It?
Watch the entire hour-long
Discovery Channel documentary
about Joshua below!
click the arrow on the big screen
on the player below.
The segments automatically load
one at a time.
below:
September 19, 1996
Joshua is born healthy.
Josh Wooten birth announcement
..
He grows into a happy boy
who loves his family, pets and sports.
March 3, 2005
Joshua is 8-and-a-half years-old.
He spikes a fever and collapses.
I take him to the Texas Med Clinic where doctors find his oxygen
level is down to 50 percent (it should be 100 percent)
Ambulance rushes Joshua to hospital.
He is admitted to Pediatric ICU.
March 4, 2005
early morning hours
Josh goes into respiratory arrest.
He has to be revived 5 times!
March 17, 2005
After 2 weeks in ICU,
Josh released from hospital
He goes back to school
finishes out the school year
and enjoys the summer
Aug 30-Oct 3, 2005
Josh extra sleepy again,
his blood oxygen levels falling again.
He is admitted to Methodist Children's Hospital
A doctor in Chicago helps San Antonio doctors
make the diagnosis of
Late-Onset Central Hypoventilation Syndrome
with Hypothalamic Dysfunction.
Sept 16, 2005
Josh gets a tracheostomy (tube in his neck)
Sept 19, 2005
Josh 9th Birthday
sadly, he's still in the hospital
and in isolation
because he developed MRSA infection.
Oct 2005
Josh home from hospital
but he has to hook to ventilator when he sleeps.
We wait to hear from Rush Hospital
Josh needs to go to Chicago to see Dr. Weese-Mayer
She is the doctor who helped make diagnosis.
We hope she will agree Josh is a good candidate
for a diaphragmatic pacemaker
so he can get rid of trach tube and ventilator.
Jan 29, 2006
Josh sings "I Can Only Imagine" for our church
not a dry eye in the place
Feb 2006
Joshua goes back to school
after the school district hires a one-on-one nurse for him.
(Remember, he has not been able to go to school
since the end of August, when he was
hospitalized for 6 weeks)
May 2006
A dear friend helped make this video,
Meet Josh Wooten
July 2006
Make A Wish sent us to Orlando
THANK YOU
MAKE-A-WISH OF CENTRAL TEXAS
and ALL THE SPONSORS!!!
WE HAD A GREAT TIME!!!!
July 30, 2006
San Antonio Express News prints story
about Joshua in their Life Section
Sept 2006
2 not-for-profit websites for chronically ill children
feature Joshua on their sites.
To see his pages click on their
logos below:
Sept 6-13, 2006
Josh hospitalized due to high sodium level in blood
Sept 19, 2006
Josh's 10th Birthday
(and he’s NOT in the hospital)
Sept 21, 2006
Josh sworn in as an honorary Cibolo Police Officer
Sept 24-29, 2006
to see specialist at Rush Hospital
Chicago skyline from hospital's apartment building
Josh studied day & night
a test shows Josh could stop breathing altogether
if the power fails & machine turns off
Dr. Weese-Mayer says Josh needs
to be on the ventilator
and he is NOT a candidate for the diaphragmatic pacemaker
- at least not now.
He has to keep his trach probably forever.
Very disheartening news!
And he needs nursing care 24 hours a day.
Oct 2006
Trip to Odessa
Nov 2006
TV Producer contacts me about
doing
for Discovery Channel
Nov 2006
Josh starts taking growth hormone shots
6 nights a week!
Feb 2007
Josh approved for Medicaid waiver program
but had to spend a night
in a nursing home first
Feb 2007
TV Crew comes from London, England
to shoot interviews for Discovery Channel
Feb 2007
Josh's Baptism
March 2007
Josh rides along with Cibolo police
March 2007
An article I wrote about Joshua
published by online
Christian magazine.
Read it by clicking here:
April 2007
Josh has a trach and ventilator
but he is still happy
especially with his dogs
June 2007
Family Vacation to Rockport/Port Aransas, TX
July 2007
Watching Cowboys Training Camp
at Alamodome, San Antonio, TX
Aug 20 2007
Josh Pilot for a Day
Sept 17, 2007
Josh got to start 4th Grade
after school district hires him a new nurse
(another nurse quit the 1st day of school this year)
Sept 2007
Josh's 11th Birthday Party
Oct 2007
Josh gets new basketball goal
the good
Joshua with his class on a field trip
to the symphony in Seguin. Then lunch in a park.
His special needs nurse at school took pictures
for me since I couldn't go on this trip
(I stayed with elderly couple that day).
the bad
Joshua's sodium level in his blood
was very high (meaning he is very dehydrated) Friday when
he went to the pulmonologist (lung doctor).
This can be quite dangerous, so he has to drink
an extra lot of fluids - even though he doesn't feel like
he needs them - and then go back Friday of next week
for more bloodwork.
premiered Thursday, November 8, 2007
on
Dec 2007
Christmas Happenings
Read about ROHHAD in this article
by specialist,
Dr. Debra Weese-Mayer
click below:
LINK
Article About ROHHAD
