Ayden was born
July 14th 2006 in Yukon, OK. Healthy baby
boy, 6.8 lbs, 19 1/2 inches long, to the
proud parents of Matt Trammell and Cortney
Studley. We stayed in the hospital the
normal 3 days, then we were able to bring
baby Ayden home. His life was completely
normal, as far as we knew. When Ayden was
about 2 or 3 months old we started
questioning his development. We took him to
his pediatrician and she agreed that he had
low muscle tone, and proceeded to make
specialist appointments for us to a
Geneticist and Neurologist. Our appointments
were over a month away from the date that we
made them! Thanksgiving was coming up and we
were invited to Ayden's Aunt Stephs house in
Lincoln, NE. The day we were leaving Ayden
had cold-like symptoms, but we decided to go
a head and make the 8 hour trip. That night
Ayden was very restless, the next morning we
were debating on taking him to the ER. Then
we had a sign from God..a little orange spot
in his diaper that appeared to be blood, we
never actually found out what it was but the
doctors were not concerned..they were
concerned about his respiratory status.
Ayden's O2 SATs were in the 80's and his
x-ray reviled that his left lung was filled
with fluid. He was intubated and flown to
Children's Hospital of Omaha. He stayed
intubated for two weeks, extubated on the
3rd week, and moved out of ICU to the floor.
We had seen all the doctors that we were
waiting to see in Oklahoma, they did a wide
variety of blood tests. Three days before we
were getting ready to leave, we got our
diagnosis..SMA Type I. Ayden's Aunt Steph
and Granddad Studley were there along with
me, his mommy. I couldn't believe what I was
hearing, I shed my tears where no one could
see me and then tried to figure out how I
was going to break the news to his daddy.
Matt had to leave while Ayden was still in
ICU to go back to Oklahoma to take his
finals for school. Ayden has been in the
hospital one other time since then with
pneumonia where we stayed in Lawton, and
then were later transferred to Tulsa. After
getting over his infection he a surgery to
get his G-tube put in. They also did what
they call a fundo, to help prevent acid
reflux and aspiration. Ayden has had many
"episodes" where he gets a mucous plug and
turns blue. That is where the importance of
his medical equipment comes in. He is
monitored 24/7 by a pulse/ox, food and meds
by tube feeding, bipap to help him breath
and rest better at night, cought assist that
we use 1-2 times a day when healthy (every
hour when sick), he has a variety of
breathing treatments, oxygen, and 6
different meds that he gets daily. We have
nurses that come in daily 4-6 hours
sometimes more. We have just moved from
Lawton, OK to Lincoln NE to be closer to
family and we really liked Childrens
Hospital in Omaha. Ayden has an OT that
comes out 4 times a month and a PT once a
month.
Matt and I are extremely blessed to
have time with Ayden and we cherish every
moment. We have learned to cope with the
diagnosis and live in the moment.
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