longing2Batdisney
DIS Veteran
- Joined
- Aug 15, 2008
I would like to ask for prayers for my baby(born July 2006)...from those who can share...
My son was born with a right looped aorta (for those who do not know-your aorta loops to the left). When children are born w/this there is usually a vascular ring that forms. His is wrapped around his trachea; which has caused trachalmalasia. This is a rare condition (but I think it is not as rare as they think; just misdiagnosed).
As a baby the doctors would tell me he had reflux (but did not have the typical symptoms), than I was told resp infections, than allergies, finally (and the final straw) asthma. HE DID NOT HAVE THE SYMPTONS; he wheezes when he eats and when he is active (we now know that is the malasia).
According to the cardiologist if he does not have the ring cut it will eventually suffocate his trachea; Dh and my problem accepting this DX (we know they are right but are they on the money) the CT he has shows a nodule on his arota at the point of the trachea but NOT the ring (there is no blood flow through the ring--this is a good thing IF they are right about the ring). What if they are wrong does a simple surgery become open heart??? We have asked and they say it is a ring...
All we can do is pray that they are correct and we are doing the right thing to help him... it ssooooo scary...
Well, on June 8 he will have surgery to cut the vascular ring...
I am having a hard time with this would really feel better knowing there is a prayer chain praying with us for a safe and successful surgery.
Thank you
My son was born with a right looped aorta (for those who do not know-your aorta loops to the left). When children are born w/this there is usually a vascular ring that forms. His is wrapped around his trachea; which has caused trachalmalasia. This is a rare condition (but I think it is not as rare as they think; just misdiagnosed).
As a baby the doctors would tell me he had reflux (but did not have the typical symptoms), than I was told resp infections, than allergies, finally (and the final straw) asthma. HE DID NOT HAVE THE SYMPTONS; he wheezes when he eats and when he is active (we now know that is the malasia).
According to the cardiologist if he does not have the ring cut it will eventually suffocate his trachea; Dh and my problem accepting this DX (we know they are right but are they on the money) the CT he has shows a nodule on his arota at the point of the trachea but NOT the ring (there is no blood flow through the ring--this is a good thing IF they are right about the ring). What if they are wrong does a simple surgery become open heart??? We have asked and they say it is a ring...
All we can do is pray that they are correct and we are doing the right thing to help him... it ssooooo scary...
Well, on June 8 he will have surgery to cut the vascular ring...
I am having a hard time with this would really feel better knowing there is a prayer chain praying with us for a safe and successful surgery.
Thank you
My prayers have already been sent your way. Shirley
My DS's surgery tomorrow around 11:30 am. We are currently up letting him play w/his brother (16) trying to wear him out and drink as much as we can get him to. He cannot have anything after 3:30 am/clear liquids stop at 7:30 am. We are hoping he sleeps until it is close to time to leave so we do not have to try and keep him from asking for his beloved first thing in the morning "Pedisure", chocolate milk.
