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Audra Pierce hasn't added a story.
So this is the story of my baby boy elias.
He was born perfectly healthy nothing seemed wrong, but he had a
hidden disease we didnt know about. And this is where our story starts.
My sons is now 8 months old but lets go back 2 months to his 6
month old checkup. Dr Ryan Tolley does all the normal stuff check his
hieght, his weight all his measurements then he checks his heart and
notices a murmur. He says to me have they ever mentioned him having a
murmur im like no they never said anything to me. He then goes on to
say its probably nothing, he will most likely grow out of it but i
dont suggest it i can still give you a refferal to see a specialist
Dr. Hrair A. Garabedian. I almost listened to Dr Tolley and said dont
worry about it but something in my heart told me to do it. so i think
2 months later 4/15/13 he sees the specialist the dr listens and
confirms he does in fact have a murmur a small hole between his right
and left valve he will grow out of it. But then he does the ultrasound
just to confirm its what he said and thats where we fight the scary
stuff out. The Dr Hrair A. Garabedian comes in and holding a paper
with a picture of a heart on it with 3 areas circled and he says your
son is going to need surgery and this is why, he was born with double
congenital heart disease he has 3 problems going on one he will
deffinetly grow out of and not need a surgery for he has a hole
between he RV and his LV. then he has a double pinched left aorta
meaning both sides are pinched causing less blood from from the heart
to the rest of his body more serious to his lungs and legs. (which is
why i have always noticed my son having a hard time trying to stand
and also his legs and feet are cold all the time even with socks and
shoes on also he gets very fatigued playing alot) the other problem
which we cant fix right now he will have to wait till he is around 1
1/2 maybe 2 years old when his heart i bigger so we can fixed his
narrow left valve because if there is a complication there we dont
have artificial valves small enough to replace and he would have to be
put on bypass which could cause serious complications. so all we know
right now is he needs heart surgery we are waiting to hear back from
the surgeon and my sons primary physician which again im glad i did
not listen to because i would not have found these problems out and if
my son had started to try to walk and got more active it would of
caused alot of strain and caused his heart to fail the dr explained.
he said i saved my sons life
update
Eli has been fighting a lot of things this is what
we are dealing with right now
these are the things we are
dealing with right now with Eli
1. CHD (congenital heart defect
3 of them to be precise and his heart is under stress right now and
dr's are concerned)
2. sensory processing issues ( the main
concern is he is having issues in his mouth causing him to gag and
choke when he eats)
3. delayed oral motor skills ( he cant chew
properly or wont chew at all and will swollow food whole
4. his
oxygen and heart rates drop when he sleeps so they are trying to
figure that out
5. we are working on the many apts to figure out
where he is with his autism and how severe it is
6. balance
issues which cause him to fall or have trouble picking himself up,
when he walks he tends to fall down and its always on his left side
when he gets up he tilts his head to the left, his ears are perfectly
fine they cant seem to figure out why he has this balance issue
7. Possible seizures
We have alot of dr apts coming up in sept and brent is losing
alot of days and believes we actually wont be able to afford the
upcoming cost for that trip, they are sending us over overnight, the
dr's office was working on trying to get ahold of special mobility
services that would normally pay for the gas and hotel cost but has
been unable to get ahold of them, and we are worried because the
paycheck that is suppose to pay for the trip for us brent is losing 4
days on it please anything will help we appologize for asking, even
prayers will help even sharing this link to help us spread the word
helps
Highlights
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