various cardiac issues

[momtofourboys]

My 4 year old had heart surgery when he was 3 months old. he had a ASD, Large VSD, and a PDA Ligation.. He currently has Asthma  cardiac he has a RBBB, Right ventricle Outflow tract obstruction, Mild infundibular  Stenosis  PFO, Tricuspid valve regurgitation, a murmur grade 1-2, bidirectional flow, Tacycardic and a pectus. These I was told were all small. He can not run very much maybe a minute without getting really short of breath. he does breath loud. He has a hard time talking in 3-4 word sentences without turning bluish grey (speech Therapist noted this) He can olny walk short distance without getting really tired . he also complains of left sided chest pain   he has had a bronchoscopy ) and that was negative for anything. They were going to do a cardiac cath on his but said he is too much of a risk and from what the ECHO showed is is too small to go in and try to repair it. they can't do a PFT he is too young. although at speech he blows into a spiromometer and can't even do that on the lowest setting for 3 seconds. Also in his post op the doctor said he could develop a  double chamber right ventricle situation
My question is with his pectus being mild looking on the outside can it actually be was then anticipated on the inside.(cardiologist said something to that effect but now changed his mind.) He heart rate can go over 190 then drop to the mid 50-low 60's
my other thought since they really don't know what is going on Cradiologist saying asthma but pulmonolgist is saying he dies have asthma, but it plays a very small part in this and he is saying it is aomething cardiac. My only other thought is could it be a Nerve Sheath Tumor, I have NF 1.
I am ready to pull out my hair. Can you please give me any advice of what to do or what you think.
MB

[Cleveland Clinic]

hand in there.  be persistent.

[Cleveland Clinic]

I think your son needs to be seen by an experienced cardiologist who deals with this type of congential heart disease on a regular basis.  It is hard to say what his symptoms are from, but my guess based on what you have described is that this is all heart related, especially that he has exertional symptoms and that he turns blue.  It also sound like he is developing cardiac arrhythmias which can be related to his condition.  I don't think that the pectus has anything to do with this given that it is mild.  Also, I don't think this is NF related.  Usually it takes much longer for symptoms to develop in that condition.  I am sure that he has had multiple chest xrays or CT's which could help rule this out.

[momtofourboys]

I am so sorry to keep bothering you. I have another question? Is there a place where I can find about his pressures. for instance with his Pulmonary stenosis, he is a 12-15, and they say that is fine for a 4 year old. I believe them but there are other tings on his echo that has number and the mean value and  was just curious about wehre I can find them and what they mean. also what is a normal pressure for a stenosis?
Thank you so very much You have been helpful, who knows I might just have to fly out there and get your opinion if I still continue not getting anywhere here.
MB

[momtofourboys]

My gut feeling is that it is cardiac. The last time he had a CT was when he was 4 months, right after his heart surgery to see what was going on, he had MRSA. they haven't done a chest xray in over a year the last time they did one was due to him being sick with pnemonia, (sprry that I spelled it wrong) the specialist have not ordered and kind of film except CT scan and that was 3 1/2 years ago.
they did try a 24 hour holter on him, that was a joke with a three year old. the sticky pad rather stick to him then his chest. they did talk about an event monitor, however said it was a 50/50 chance on getting his arrhymias due to hitting the record button. hi BP at this past visit to the cardiologis wasn't bad 105/57.
thank you for your advise. I am just going to keep plugging away and hoe not too serious happens to my little guy.
Michelle