Hi as some of you know I have a 4.5 year old (must not forget the .5) he has a lengthy heart issues. we went to Boston for his EP study where they only looked at the upper part of his right heart and increased hi HR. said all was fine. that if he has a low HR 40's and passes out 2 more times then they will put in a pcae maker.
Cree Cree also has a narrowing of his voince box they think. he WAS suppose to og for a brohn. on hte 30th however the ENT said he couldn't help him unless the narrowing was so severe he was choking in his food.(I understand that) also since he ahs had issues iun the past with anestesia he wasn't comfortable putting him under and risking putting him into an arrythemia. (WHAT!!) I guess at one time he was having arrythemia after surgery (never knew this and the doctors in Boston couldn't get his heart to do any type of arrythemia)
he can't believe that they didn't put in a pace amker in and he feels strongly that his narrowing is due to cardiac from what he read for boston and other doctors.
NOW WHAT DO I DO ARGH!!! he asled me what do I think. I told him it doesn't matter what I think they don't listen. he said he does and HE will get to the bottom of this and help me out his issues are cardiac and they need to listen and ALL be on the same page
I think it is important that your doctors speak with one another and know what is going on from ALL aspects of your child's well-being. That you found an ENT that wants to pull all of the information together instead of treating each symptom as a separate entity is WONDERFUL.
I think your gut is already telling you what to do. Let the ENT "get to the bottom of it" and be your advocate. Because doctors are able to speak the same "language," perhaps his discussion will reveal more than you are able to express, and any holes he has in understanding will be clarified. Then...he can clarify things for you.
Good luck. I hope things take a turn for the better.
So sorry you are still battling for Chris......Be sure to take some time for yourself so you'll be stronger if/when the next battle arises.
I love that Chris' ENT is willing to work with you!! That's great news! Maybe he will be able to facilitate another opinion on the appropriateness of a pacemaker implant. If another doctor says it's best to wait, then I'd probably sit tight. Hang in there, you've got a good team player to help you now!
Hi Michelle, I am glad that you are finally going to get someone who will work with you and for you, not against you. Sometimes dr.s get so caught up in who is right and which procedure THEY do and What Diagnosis They do, that they forget they are working for You and for Chris. Chris is the one who is going through all this REd tape and having the hardest time, but you as his mother and caregiver have to speak up for him and find the right dr. which it sounds like you may have succeeded in finding at long last.
Make sure you keep on this new ENT and it sounds like Chris is about to get the right diagnosis and mayby the pacemaker he needs. Whatever it is that he needs, I hope his turn up at bat is a HOMERUN! Good luck and keep us posted!
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