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Im glad i didnt listen to my sons Dr "UPDATED"

Posted by on Apr. 18, 2013 at 2:42 AM
  • 14 Replies
1 mom liked this



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:

so a friend helped me make this website its CHD website and made a donation button for a fund for eli to pay for gas to his heart apts because they are 3 hrs away and for diapers and just for eli this is the website 
http://www.totsites.com/tot/chdelias


Update:

so the date for Eli's heart surgery it will be 5/3/13 or 5/9/13 we will have an answer tomorrow, it will be at sacred heart childrens hospital they will be doing a Coarctation of the aorta repair surgery cutting away the part of the aorta that is double pinched and then stitch it back together and thats it simple and fix and they have high hopes for him

by on Apr. 18, 2013 at 2:42 AM
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Replies (1-10):
Narwa
by on Apr. 18, 2013 at 9:35 PM

BUMP!

singlemom0710
by on Apr. 18, 2013 at 9:41 PM
I had the same thing as a child, after I was born my mother new something was wrong but doctors kept saying your a new mom and your over reacting, we finally they got sick and tired of my mom bringing me in they checked me out and next thing you know they are emergency flying me for an emergency surgery..I was 3 months old when this happend..


Quoting Narwa:


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


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kitty8199
by on Apr. 18, 2013 at 9:45 PM
I bet they felt like a jackass.

OP praying for your son


Quoting singlemom0710:

I had the same thing as a child, after I was born my mother new something was wrong but doctors kept saying your a new mom and your over reacting, we finally they got sick and tired of my mom bringing me in they checked me out and next thing you know they are emergency flying me for an emergency surgery..I was 3 months old when this happend..




Quoting Narwa:


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


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Narwa
by on Apr. 18, 2013 at 11:49 PM

updated!

RoseWall
by on Apr. 19, 2013 at 12:00 AM

hugs

RobinChristine
by on Apr. 19, 2013 at 12:03 AM

My now 17 YO son was born with Tetrology of Fallot, he was 15 months when he had open heart surgery. In a nutshell he had 4 defects of his heart. His story is on my homepage,stop on over

polkastria
by Member on Apr. 19, 2013 at 7:54 AM
My son is 24 now. Born with a blocked aorta, a small hole in his heart, and a malformed valve. He had surgery at 6 days since he wasn't getting enough blood to his lower extremities. Back then even the tests for his problem had a risk of death and I had to sign forms allowing the test. He was a premie at birth and the problem with his heart made it look so much worse for him.

They almost couldn't find a hospital willing to do the first surgery since the chance of him surviving was 50/50 at best. But being so small...it was even less for him. One nurse told me that the way the odds broke down were 50% he'd live, 90% chance he'd need equipment to survive after surgery. Maybe a 10% chance everything would go just right.

We hit that 10%. And I was a basketcase for that first year. I kept his crib in my room when he did finally come home. I barely slept. Every noise made me leap up to check on him. I didn't take care of my own problems at all and ended up in the hospital myself with a serious infection that I had ignored.

Now he's 24. He's had two more surgeries and still has more to come. He has limitations on his work. No more than 25 hours a week and he can't lift more than 25 pounds. He also has to have the ability to take breaks for a few minutes if he needs it. He was lucky enough to find a job that allows all that where my husband, his stepfather, works.

I hope things work out for your little one OP. It's a scary time you are in and it stays scary for a long time. Find a good support system and don't make the mistake I did by trying to be super mom.
Take care.
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stargaze281
by Member on Apr. 19, 2013 at 9:21 AM
omg I hope your son turns out well and you did a good thing to follow your gut feeling about your son.
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fallenstars
by on Apr. 19, 2013 at 9:24 AM
Positive vibes yalls way op.
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Crazylife1994
by on Apr. 19, 2013 at 9:30 AM

I always say go with your gut with your children. I'm glad you found out what was going on.

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