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Payton
is our first child. My pregnancy with him was
wonderful but I do remember feeling him
move less toward the end of the pregnancy. I had
read that they start to move less towards the end
because they get bigger and that there is just
less room for them to move so I did not think
anything of it.
After
20 hours of LABOR and "failure to
progress," I finally received a C-section and
Payton was born on July 14, 2000 @ 5:33 p.m. He was
beautiful, and scored high on his APGARS. We were
sent home with a clean bill of health and
everything seemed wonderful.
The
only strange thing that I noticed before anyone
else was that Payton's coloring seemed
"mottled." He always seemed a little
purplish throughout. No one else thought anything
of it, so I figured I was being my over paranoid
self.
At
Payton's 2 month well visit, his pediatrician
immediately acted weird. He asked a couple of
questions about movement and went and got his
partner to show Payton to him. They were pulling on
his arms and he wasn't really pulling his head up.
He was, but not like he should have been I
guess. Then he asked if he always breathes with his
belly like this? I really didn't understand where
they were going, but I knew it was bad and
immediately felt this weird rush of nerves that
really didn't ever go away. You never realize how
lucky you are to have a healthy baby, until you
don't...I know that I didn't.
We
were sent for the MRI and neurologist visit. This
was the first of many bad experiences with many
doctors. Our first neurologist was a mess.
NEVER organized, always forgot what we were there
for, lost our paperwork, didn't check on the blood
work that was sent out, didn't realize they had to
send the sma test somewhere else, didn't remember
our names when we came in, poor people skills, the
list is really endless. After a couple of wasted
trips to see him we STILL were waiting for a
diagnosis and after many phone calls to his office,
we got nowhere. We just had to wait...
While
we waited for the tests to come back, Rob and I and
our family did not realize the severity of what was
happening. We figured worst case scenario, he'd be
in a wheelchair his whole life and we would spend
ours making his the most wonderful life he could
possibly have. We were not very worried, but we
were anxious to get the results.
During
our 2 MONTH wait for the blood test results,
Payton did seem "floppy" to us, like the
doctors had said, and I noticed that he sounded
congested all the time. I figured that this was
because he had allergies or something...I was
getting ready for work one day and all of
sudden I hear some weird noises. Robs brother and
sister in-law were visiting us and the baby. I
started downstairs thinking oh God I hope the dogs
didn't get in a fight and hurt each other. When I
got into the kitchen I realized that Rob was making
these noises and he was completely freaking out.
Then I see the baby laying on the kitchen counter
and he was gray. He was not breathing. I gave him
CPR with 911 on the line telling me what to do.
After a few rounds of it, Payton came around and
started crying and breathing. I knew when we sat in
the ambulance on the way to the hospital that
something was seriously wrong. I just knew it...
We
spent 6 days in the PICU and the intensivist acted
like he knew what was wrong but didn't want to
speculate. He was very unsympathetic but tried
very hard to get the blood test results for us.
They just weren't ready. Payton was absolutely fine
those 6 days. They kept us for tests and
observation I guess. The swallow study had shown
that he was aspirating slightly and I was told
that I couldn't breastfeed anymore. We had a nurse
that was just dying to give me the bad news. She
made a couple of references to the fact that he
wouldn't be eating by mouth for long. She told me
that the intensivist knew what Payton had and the
children don't live for long...I was completely
losing my mind. I still had no idea what was going
on, so I finally got on the internet and started
searching for some congenital muscular problem and
I found sma after a while. I knew from the first
reading that this is what Payton had. He could have
been the poster child for sma. The more I read, the
more it was confirmed. But I still had no
diagnosis, and NO ONE in my family would even
listen to what I had found. They did not want to
hear worst case scenario and I can't really blame
them. I was definitely praying that I was
wrong. But I had to keep it to myself for a
long time, and when Dr. Epstein called and told Rob
over the telephone that he was positive for Spinal
Muscular Atrophy Type 1, I wasn't surprised.
Payton
was close to 4 months old at this time. We were
told that he would eventually lose the ability to
swallow and either just stop breathing or get sick
and stop breathing. We wanted another opinion. We
saw neurologists in Miami that were supposedly
experienced with sma (we felt as though most
people, docs included, really didn't have any
experience with this disease and wanted to see
someone who was up to date) The only doc that would
comment said "look at him,"
"he's very weak," "I give him
3 months." Then he left the office.
Rob
and I are fighters and so is our son. We were not
going to give up on finding some way to deal with
or beat this. Nobody was going to tell me that my
baby is going to die and when!
Then
I found FSMA. I found Regina. All of our friends
and family know how close I am to Regina now
and how much we love her and her family, but I
could really never repay her for what she did for
Payton and for us. Regina and Jim Nolan have a son
named Ryan that is now 4 years old with type 1 sma.
I met them through the FSMA message boards and
they were crucial to helping us get the right
equipment and sort of gave us the cliff notes on
how to deal with sma. Regina is an amazing mom and
Jim is an amazing dad. They do it all and they have
for a long time. When I first met them, I looked at
Ryan, the bi-pap, Regina suctioning every
couple of minutes, etc... and said no way. I
can't do it. No way...
Payton
started to lose the ability to swallow around 5
months. We started laying him down to eat and
eventually it was the only way he could. We
were told later that he probably had been
aspirating the whole time, but we didn't know...we
were just trying to get him to eat. I really did
NOT sleep during this time because HE couldn't
sleep. Payton was so hungry but he just couldn't
get it down, so he was constantly irritated and
frustrated and HUNGRY. We took him in to get the
g-tube. What a nightmare...We went to the same
hospital with the same intensivist...
This
time was better though, even though it was harder
on Payton, because we were now pretty well informed
parents. We don't like being at the mercy of
some nasty nurse that gets a kick out of
staring at us and watching our reaction to horrible
news like were in some movie or something. The
nurse really wasn't as bad as the intensivist
though. He literally hunted me down for days,
trying to get me to sign a DNR form til Rob
and I finally sat him down together and told
him that if anything happens when we are around and
we feel that it is too much for our son we will say
so...if anything happens when we are not
around and he is not resuscitated they will be
responsible...and we will not now or ever, be
signing a DNR form....
It
was really strange because Payton was fine. He
wasn't sick, he didn't have pneumonia, we were just
there for the g-tube. Yet this doc was acting like
Payton had only days left. He hooked me up
with hospice and actually offered to put me in
a private room where Payton could have morphine and
we could say good-bye there in case we didn't want
to do it at home. We knew that he was not in
that bad of shape so we just tried to get him out
of there as soon as we could. Fortunately, there
were so many OTHER nurses that just loved Payton
and were SOOOOOO good to him and to us. I wish
some of them did home-health! What a treat it
would be! Payton had the gastrostomy and
fundaplication (the tying off of the top of
the stomach-to stop any and all
reflux-vomiting, etc..-if not, he would get fluid
in his lungs!!) The surgeon talked us into
getting both at once and over with. Looking
back it was a good move, but at the time we were
not sure. He came out of surgery so weak, intubated,
hooked up to everything and anything in the PICU
and he was so pale and in so much pain. His scar
was much bigger than we had anticipated and
just looking at him crushed us. Rob and I both
would have gladly done the same operation on
ourselves ten times over before we saw him go
through anything even close to this....
Payton
was finally extubated after a week and a half and
we were sent home a few days later. Life was
never the same after this....
We
initially were sent home with 24 hour nursing. This
was TOO much for me, and until recently
nursing was always a huge issue...But now I have 4
girls that come for 12 hour shifts on alternating
days and each and every one of them is a blessing.
They all love Payton so much...they really do. It
is my lifesaver to have a nurse here that I trust
overnight so that I and Payton can sleep with virtually
no worries.
We
were also sent home with a DME company, an oxygen
tank, a pulse oximeter that we were told Payton had
to wear 24 hours a day, a feeding pump for
continuous feeds overnight, a suction machine, the
bi-pap, masks, yankeurs, suction buckets and
tubing, suction catheters, 60cc syringes for bolus
feeds and we were like WHAT??????? But we
just figured it out. Slowly but surely and I have
to say that I must've called Regina every single
day for info and she ALWAYS had it for me.
Sometimes I wonder what I would have done without
her...
At
about 7 months, Payton couldn't get through the
whole nights' sleep without his sats dropping
dangerously low. So we started having him wear the
bi-pap gradually until he finally would fall asleep
with it and then he wore it all night every
night and has ever since.
We
also got the in-exsufflator (coughing machine) around
this time. We are as aggressive as possible with
the in-exsufflator, and we know that it and the
bi-pap is what has saved Payton for almost a year
now.
When
Payton was about 11 months he lost the ability to
smile. I remember being really pissed
about this. From the neck down this baby can't move
or swallow and now he can't smile?? sma is
vicious...
On
June 2, 2001, on behalf of Payton, Outback
Steakhouse (my employer) hosted a charity dinner to
benefit FSMA and it was WONDERFUL! We had about 260
guests and raised about $40,000! It was quite a
high to help raise money for research!! We felt
closer to a cure!!!
There have
been no hospitalizations (knock on wood) since
the g-tube. I think living in south Florida, his
RSV shot every 30 days since he was 3 months old and
Payton never being around school kids has
definitely helped, but mainly the coughing and
bi-pap have kept him well.
Payton
is very expressive with his eyes and facial
movements. He LOVES his DVD's and has quite a
collection. He knows who daddy and mommy and
grandpa and grandma and Susan (his PT and the love
of our lives) and Sandra (his nurse) and Karen (his
nurse) and Solange (his nurse) and Lucy (his nurse)
and Eileen (his best friend and speech therapist)
are. He likes to play and he LOVES attention! He
demands it!! He is very happy and we keep things
happy around here. We have fun with him and we take
him out as much as we can!
Payton
celebrated his first birthday at Universal Studios
and we are taking him to Disney in early 2002.
It
is definitely hard work taking care of Payton, not
just physically, but emotionally. It can be
overwhelming to think that this perfect little baby
does not have a chance. But when I look around me
at all the healthy children in the world and see
all the things I would have taken for granted, I am
thankful that now I know better, and I cherish
every single breath this child takes...and so does
Rob...and all we have to do is look at each other
and we know what the other feels and thinks....and
that makes us like this impenetrable force that is
"Payton's parents" and we feel VERY
strong in that way. We are not perfect and we make
mistakes, but we give everything we have to Payton
and we wouldn't have it any other way, sma or not.
Payton
will be 17 months old soon and I hear we are about
$14 million away from a treatment/cure for sma...no
one deserves to live or die like this.....not
Payton.....not the thousands of babies that have
already died...or the thousands that are alive and
WAITING for help....................
I
would like to say thank you to all of our friends
and family for all of your support...you have ALL
been amazing and shown to us how much you truly
care for Payton and children like him...and a
special thank you to my mom, who I could NEVER
thank enough for being there to let me clock out
once in a while...We love you all and could not do
this without all of you!
Love,
Rob, Debbie and Payton Freeman :-)
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