Louisville baby has had a rough start to life simple tasks like breathing and
coughing on his own or impossible the diagnosis that solved a mystery and the
medical machine bringing hope bricks is eight months old and we just got home
yesterday after 225 days in the hospital in the hospital because in November he
stopped breathing he has a genetic disease called smart one smart stands
for spinal muscular atrophy with respiratory distress type one it affects
very small population there's only somewhere around 100 known cases in the
entire world right now wouldn't he initially got to the hospital when he
was intubated he coated a few times twice and during one of those times we
looked at each other and said we're bringing him home right
so when all those people were there that made that happen I think that was the
most emotional part so much leaving people that literally saved his life we
actually didn't know that most kids get discharged in the ambulance we just
assumed we would drive him home because it was nice to just kind of be able
leave normally as a family smart diagnosis that paralyzes your diaphragm
some need a ventilator to breathe they explained to us that he would need to be
on a home ventilator we did know what that meant
we just knew it was a different one than what he was on they put him on it it
didn't work for him he didn't tolerate it it was kind of a head scratcher for
the pulmonologist at the hospital eventually they just kind of did some
research and looked around and found then tech and learned about VOCSN
the other home ventilator he had gotten to be a really fussy baby and you know
some babies are fussy but he's not so I was nervous to try something else but I
knew we had to get home just a huge relief the effort that had been tec put
into from the engineering to the clinical team to coming out to us
several times stayin staying with us 24 hours a day
several days making sure that he liked the ventilator and literally the time
that they changed him on it permanently he didn't even notice like he didn't
even flinch and that was such a huge relief
for us I remember we handed him a rattle and he was just laughing and playing and
I remember looking at you like he likes it we can go home VOCSN
is awesome with a lot of his lung issues and some of the couple of times where
his lung is had collapsed on the other ventilators we couldn't get the stuff up
out of his lungs really and this with the built-in Caucasus with this box and
ventilator as a game changer for him and I think it's gonna really moving forward
keep him from having to go back to the hospital a lot the fact that this was
built in the doctors were like well let's give it a try
and it just has been a miracle for him keeping him healthy and the fact that
it's just yeah like really lightweight and really easy to use we planned for
him to be able to have the best life he can but I think that VOCSN is gonna let
our family do that this is just amazing like the fact that we can strap it onto
his stroller and have the oxygen and the cough and the suction in one place it
just gives us the peace of mind that we can be independent yesterday he was like
the happiest for the longest that we've seen him he knows he's home he's happy
and that's all you want yeah yeah it's for your kids to be happy the technology
that's available right now especially with with this box and ventilator you
can be okay you can be a normal family you can have a great life it's all gonna
work out and one day you'll be able to come home and it'd all be behind you
you