[tri-wings] New-Tyler's story-very long

HII am new here and wanted to share my son's story.  He had a genetic 
condition, although it wasn't a trisomy.  I hope I'm still welcome.  It's 
very hard to find support that understands not only the pain of losing a 
child, but also the joy and pain of having a child with special needs.  Here 
is his story:
TYLER KEENAN RITSON
6/8/2001-8/14/2002

Our beautiful son Tyler was born on June 8, 2001, at Summerlin Hospital in 
Las Vegas.  He was full gestation and the pregnancy had been different from 
my first-kidney stones and cramping-but not terribly unusual.  At first 
everything appeared normal.  He was left with me for about an hour.  When 
they took him away to give him his first bath, he turned blue for the first 
time and was taken to the NICU.  Throughout the day, whenever he became 
agitated, he would cry and then turn blue and become stiff.  The following 
day he was transferred to a bigger hospital nearby.  He had many tests those 
first couple weeks.  Everything appeared normal.  His heart, lungs and brain 
all appeared to be normal.  Tyler's pinkies on both hands were clinodactyl 
but no one was terribly concerned about it.  After two weeks of turning blue 
several times a day, they stopped feeding him by mouth and inserted a tube 
into his nose for formula.  They all believed he had severe reflux.  After 
two weeks of getting nowhere, they were concerned about his airway.  After a 
bronchoscopy was done he was given a tracheotomy.  His airway appeared 
normal, but they were concerned that it might be collapsing when he was angry 
and they felt it was important to maintain a safe airway.  The following day 
he became upset and turned blue again.  They feared the tracheotomy tube had 
fallen out so they removed it and couldn't get it back in.  As they tried 
Tyler's heart rate plummeted and he was intubated and given ephedrine.  After 
two more weeks and several more normal bronchoscopes they decided to leave 
the trach out and take him off the ventilator.  Tyler suffered some lung 
damage because of the ventilator and had oxygen requirements almost all of 
his life when sleeping.  After five weeks of making no progress in defining 
Tyler's problems we had him transferred to Texas Children's Hospital (TCH) in 
Houston, Texas.  My parents live in Houston so they were able to take care of 
my daughter while I stayed everyday at the hospital with Tyler.  His 
chromosome test came back when we first got to Houston showing that Tyler had 
a balanced translocation between 2 and 5.  We were devastated.  I was told 
that it was the most common chromosome issue and that most people who have it 
(1 in 500) never even knows it.  Both my husband and my chromosomes came back 
normal.  After a month and a half at TCH they were no closer to diagnosing 
Tyler and we were desperate to bring him home.  In the meantime my husband 
had bought a house in Dallas so we could have a dependable children's 
hospital nearby.  Las Vegas simply doesn't have what Tyler needed.  They 
would not let him leave without a safe airway and so in an attempt to get our 
boy home, we allowed him to be retraced and given a g-tube.  He had not 
learned how to eat because of having the tube for so long.  Finally, on 
September 12, 2001 Tyler came home (to my parents house) via ambulance.  He 
was on a ventilator at night to allow him to rest.  This was weaned within 
two months.  The first week of October we brought Tyler to Dallas and the 
kids and I got to see our new home for the first time!  He had nursing eight 
hours a day five days a week for the first couple months.  After that we had 
three days a week.  OT and PT saw him two times a week respectively.  On 
November 14.2001 Tyler got a trach plug and went into respiratory arrest.  He 
was taken to the hospital and was there for several days.  He underwent 
further testing while there and seizures were once again ruled out.  Our 
final diagnosis was Severe Breath Holding Spells.  Tyler was a beautiful 
little boy with big blue eyes and blonde hair.  Aside from the curved pinkies 
he had few, if any dysmorphic features. He was small, both in length and head 
circumference, but on the charts.  He was very weak either from hypotonia or 
from the length of his initial hospital stay.  By the time he died at 14 
months he could pull up, blow kisses, clap his hands, rock to music and eat 
almost entirely through his mouth. He was constantly gaining ground and 
really seemed to be doing well! He loved to suck on the two middle fingers on 
his left hand.  He had them in his mouth so much that he had done some 
temporary damage to the nail beds.  He was a sweet boy who loved to be 
cuddled, take baths and watch his big sister.  He also loved Sour Patch Kids!
The bottom began to fall out of our world on Sunday, August 11.2002.  Tyler 
became agitated on a car ride home from the store.  He turned blue and became 
stiff.  This wasn't unusual; he did it daily.  This time, however, Tyler 
didn't recover.  My husband gave him breaths with our ambu bag and I pulled 
the car over.  He was limp, blue and didn't have a heartbeat when we pulled 
him out of the car.  We did CPR on the embankment and my husband called 911.  
We got his heart going again, but he wasn't breathing on his own.  On the way 
to the hospital he began breathing on his own and crying.  A CAT scan in the 
ER was normal and Tyler was released the following day.  Little did we know 
that a hypoxic event could take up to 72 hours to manifest itself on a CAT 
scan?  At home, Tyler did almost nothing but sleep.  When he was awake, he 
would smile for a minute or two then begin breath holding until he would 
exhaust himself and go back to sleep.  He seemed to be in pain.  On 
Wednesday, the 14th he began having seizures and was life flighted to the 
Children's hospital.  They had a very difficult time getting his seizures 
under control.  A CAT scan came back this time with significant brain 
swelling on the top, middle and bottom of his brain.  We were told he might 
live if he was put on life support.  However, if he did he would to some 
degree, probably be blind, deaf, immobile and retarded.  He was none of these 
things prior to these events.  We opted to spare our baby any more pain.  
He'd endured so much in his brief life, we couldn't justify anymore.  We got 
to hold his sweet hands and kiss his beautiful face as we said our good-byes 
and promised eternal love.  He died peacefully minutes after we signed the 
DNR.  For the rest of our lives we will be incomplete.  However, we are 
grateful to have been a part of his precious life.  He touched and changed so 
many people in his life.  He made a contribution.  He will always be our 
beautiful baby Tyler monkey.  We will miss his kisses and our hearts will be 
broken because of all the dreams we had for him that will never happen.  We 
will always love you and miss him.
Thank you for listening.
Jennifer Ritson


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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