After a week in the NICU he was sent home deemed
healthy. 2 months later he was in hospital for a week
having cataracts taken of both eyes. Then he was back and
forth to Dr's because he could not eat. Kayden was getting
very little because he could not suck at all. And he
always was congested. At 5 months he was rushed by
ambulance into hospital he could not breath and was
showing signs of not being able to thrive.he spent 6 weeks
in the hospital when after alot of talking and fighting
for someone to listen he ended up with a Ng tube. But that
took 6 weeks they placed it the day before we went home.
We seen a genetics dr and he did some tests and said I
will get back to you. We didn't hear back for almost a
year. In this time kayden had a g tube placed and had
another eye surgery and contacts were placed in his eyes.
Kayden threw up every day multiple times a day. And always gaged.
He never grew much in that first year. And no mild stones were met for him. I had kayden during the day
everyday and then he would go home to his mom. I took kayden to
all his appt and therapy every week. In 2012 kayden came to live
with Ken and I. He was still throwing up every feed and he had a
few more eye surgeries. In 2012 kayden had a fundaplication done
to hope he would not throw up anymore but that didn't happen. He
then had a gj tube placed and they had us feeding him around the
clock. But kayden was still getting sick and he gained so much
weight he couldn't move so back to a g tube we went. Kayden was
always such a happy loving boy. But kayden did not sleep. He was
awake most of the time. He would nap a bit during feeds but that
was it. Sorry kayden got his diagnoses in 2011.
was happiest when he was home and could play with his own things.
He didn't like to travel much. He hated the car dr said cause his
spine was so bad he couldn't get comfortable. Kayden had many
trips to hospital for sleep studies and med changes. He spent many
weeks in hospital. Kayden could not take the sun at all. He would
burn very quickly and even in the shade. He wouldn't open his eyes
outside but would put a very bright flashlight in his eyes. In
2013 the pain in his body was really getting to him Dr's really
tried helping him. He ended up on oxygen at night he just could
not keep breathing without help. In may of 2014 kayden started his
decline. He was on 24 hour oxygen and pain meds had to be
increased alot. Kayden had it all seizures throughout his life
pain unable to use his body the way it should. But through it all
kayden showed nothing but love. Kayden was one very amazing boy
the light of lives. And ken and I are very proud to be able raise
this amazing boy.kayden Kayden passed very peacefully at home
in my arms Aug 24 2014.