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4 year old has complete RBBB and free flowing pulmonary valve
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4 year old has complete RBBB and free flowing pulmonary valve

hi there,
Im new to this but seems i dont have answers .. My 4 year old had a Tetrology of Fallots repaired at 6 mths old he was born at 26/ 40 and alot of associated prem problems .. in the last 12 months he went from only having a mild pulmonary regurgitation to haveing a free flowing pulmonary valve and complete RBBB the docs have said that he is too young to do the tests to justify doing the surgery right now .. also to complicate things he had CLD (cronic (chronic) lung disease) but only recently diagnosed with 2 types of asthma .. the docs said the only indication that he is having problems with his heart will be breathing probs (asthma type symptoms) .. so i am very confused with how they are saying that his respitory probs are not heart related ... We now have to wait 12 months for his surgery however have no idea what to look for if his heart is not doing well ?? please help i am so confused
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306245_tn?1244388567
Some sings are his color, breathing hard(where he is sucking in at the ribs and in the neck area. called retraction) his little notrils are going in and out (usually all three will happen at once everyone has nasal flaring at one time or another.) grunting is a noise like you are trying to poop. decrease in food intake. weight loss was he on a vent when he was little 'cause that can also cause breathing issues.
The type of breathing issues your doctor is talking about for his heart could be and I am not sure mean that he is in heart failure. Chris ahs the flaring, color change, grunting retraction and grunting but when he was born he always feed poorly and he had these same symptoms as he does when he is sick and that one time they said he was in heart failure.
He too has a complete right bundle branch bloc as well as a patent foramen ovale with bidirectional shunting, pumlonary regurgitation, right ventricle outflow tract obstruction, a pectus ex. plus he has a narrowing in his throat.
he did have a huge VSD repiar as well as a ASD(PFO repair and PDA ligation when he was 3 1/2 months old) he has all but one sign to be labeled TOF.
good luck and I hope he wil be okay. Chris was 4 by the way when he had an EP study to find out why his HR goes way up to over 200 he also goes into the mid 40's
Michelle
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772128_tn?1235187880
thank you for your response, AJ has no weight loss as such however he has not put on any weight in over 6 mths and has grown a fair bit the doc said for me not to worry cause he is still in the correct weight range ?? his appetite has decresed about half in the last 6 months and he can no longer tollerate eating meat ??  ... the sucking in at the neck he does ever time he lays down along with a lovely shade of grey/blue around his mouth and nose yet they can not get a O2 saturation reading because his hands and feet are extremely cold , so the docs response was not to worry about it ... He cant even walk for 5 min before he has to sit down or get carried or sit in his pram .. i am getting so very annoyed because the doctors keep saying dont worry ... easy for them

kindest regards kathy
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306245_tn?1244388567
Kathy,
From what I was told and boy your little one sounds like my guy, as far as weight my 5 year old, Christopher is only in the 24% for weight. I know a 2 year old who weighs more then he does. he just reached 40 and was born at 8 pounds. has he been to an ENT?? Christopher's Cradiologist was very insistant that his breathing problems were all asthma and because he was on a ventilator at 5 weeks for 11 days and then when he had his heart surgery at 3 months. well it took 2 pulmonary doctors, speech therapist, and 2 ENT(EAR NOSE and THROAT) that there was a narrowing in his throat. he was making noise every time he walked that sounded like asthma but it was actually coming from his throat (this is called stridor) they took the scar band off and he still has a 19% narrowing(he did have a 29% narrowing) and they ALL are saying it is due to cardiac issues. FINALLY after all of this he is realizing something.
as far as an 02 sat some places ca put the thing on the person's ear (not sure how accurate it really is.) it is like a band aid type looking one. can you use something like a warming blanket to get his fingers warm?
Christopher can't even run or walk that far. we showed the cardiologist by having him run and at one point he got tired after only coming down 20 stairs and he sat down and had to rest for a mnute but his Heart rate was 84 and that is with exercise. his nurse there said the machine was broken. I had my sat amchine too and it read the same thing she never told the doctor there were two machines. they keep saying he is okay. He can be walking and get so tired his HR drops and his color gets bad. he is too young for a stress test and they just kept telling me he will out grow this well he is getting worse. I finally wrote the doctor a "nice" letter and dmeanded someting to be done. Christopher now has a loop recorder inside him and in the pst 2 weeks has recorded over 200 oages of "unusual things with his heart. not sure what that means.
about his eating, either request, if possible, to go get a speech eval or an ENT eval. a speech therapist can monitor his swallow function to see if something is wrong with the way he is eating or if the food has issues with his throat.
Oh one more question,  does AJ has bi directional shunting. it means the blood in his heart is flowing both directions. Christopher has had this, but it was intermitten. and when it happened he would turn color especially in warm water like his bath.
good luck
Michelle
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