Story Project
Tommy's Story
Tell us your story.
Tommy went to his 5th day of 1st grade at Minter Creek
Elementary school on 9-9-05 just like every other kid. Tommy
was a normal, healthy kid up until that point. Tommy had a
seizure at school and was taken to Mary Bridge
Children's Hospital in Tacoma, WA which started a 2
week stay there and a transfer to Children's
Hospital in Seattle, WA. Within a 2 week period Tommy lost
the ability to eat, drink, walk, talk, and use his hands.
Doctors ran numerous tests on Tommy. No answers were to be
found. No meds could stop his seizures and he ended up in
status epilepticus. That was when we transferred to
Children's. He was admitted to the PICU and put into
a medicated coma for 10 days. During which Tommy stopped
breathing a few times and doctors were unsure he would live
through the week. He did make it and after coming out of the
coma his seizures stopped but nothing else improved. We spent
another month in the hospital with no improvement. Tommy was
on numeruos meds for seizures and anxiety and his dopamine
levels were low. We brought Tommy home from Childrens in
November of 2005 and lived every day with the heartache of
missing our son. All we had was a little boy who slept most
of the time and when he was awake he just sat around and
stared. He couldn't communicate with us. We tried to
treat him as normal as possible but I don't know how
much of that helped. Then one day as quickly as the illness
came on...it started going away. It was much like a baby
learning. He crawled, then climbed, then started using his
hands, then walked with furniture and help, then finally on
Easter day of 2006 our Tommy took his first steps in 7
months. It still brings tears to my eyes to tell this story.
Within 2 weeks most of his functions came back. Within 1
month he was re-potty trained, talking fully, eating fully,
and learning to walk steadily. Tommy's story is such
a long detailed one, that it takes more than this short area
to tell it.
What does Children's mean to you, your child and your family?
Children's really did a great job of making us
feel welcome. They supplied us with a place for our Motorhome
to park since we were 2 miles short to qualify for the Ronald
McDonald house. They gave us grocery gift cards to buy
groceries to stock our motorhome so we would have food when
our then 4 year old would come stay with us on the weekends.
She was living with my parents and would come up on the
weekends. The nurses and volunteers were so good to our
daughter. During our stay we celebrated Halloween at the
hospital. They threw a party and included our daughter as
well as our sick son. They gave them gifts and treats and
attention. They made them feel special. The social workers
brought my daughter treats and toys and gave us tickets to
get out of the hospital and take her somewhere. I
can't tell you what that meant for us. We needed to
spend time with her and have a little normalcy. It was hard
to live day in and day out in a hospital room not knowing if
this was the last day you would see your child alive or not.
But you know after 2 months of living in a hospital it starts
to feel like a home. A weird home, but a home, nonetheless.
We had laundry facilities, a bed to sleep in with our son,
people there around the clock to meet not only our
son's needs but ours as well. To this day when we go
for clinic appointments, we still run into our "hospital
famliy". The day we left the hospital to bring Tommy
home, the nurses cried and hugged us. Tommy's was
such a rare medical case and he suffered so much that the
nurses and doctors really became attached to him. When our
son walked into Children's hospital 8 months after
his illness started for his first clinic visit after recovery
we went to say "Hi" to our favorites and we were
greeted with hugs, tears, and joy. I can't tell you
what some of the doctors and nurses at Children's
mean to our family. They saved our son's life.