As you all know my son is 10 years old now and the doctors are wanting him to have the spinal fusion surgery. What are the thoughts on this particular surgery? How many kids have had this and came out better than when they went in? I was told there is a chance that he may have to use a vent when he comes out because of his lung functions. Im torn i know this isnt something the doctor would recomend if it isnt good for him but how can i fully agree when there is a chance that he may not be as healthy as he is now when he comes out. And really thats not saying much because he really isnt healthy as it is.

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Hi Danielle,

My son Chris is now 25. He had spinal fusion and rod placement when he was 13. He did very well with the surgery. I do feel that his quality of life is better. Friends I know that did not do surgery or they waited too long to do it, had issues with frequent pneumonia. How are his lungs? And I might add that Chris has had a vent for 3 yrs using noninvasive mechanical ventilation,(We see Dr. John Bach in Newark) Where are your doctors?

Please let me know if I can help you in any way

Kathy

Hi I'm glad to hear it worked out for ur son. Jacobs lungs are already getting bad he inhales 60% and exhales at 35% so his lung function is low. We see doctors in Charleston at musc. It's just scary to think something may go wrong and I lose my reason for living.

Do the doctors there do non invasive vent care? My son's NY doctors wanted to trach him which Chris did not want. The vent has made such a difference in Chris' lung function. He is able to breath stack with it and move secretions. (Sorry this is off topic from your original surgery question..but it sounds like you are worried about his lung function too of course) I was afraid of the vent at first but it is the best thing and it is so helpful. Look up Dr. John Bach..he is well written and has had good results with his patients

All of this is so scary..Keep asking questions...I'll be praying for you and your son

I really have no idea I hadn't even thought about that. My son is already so weak he can't stand his lungs are weak his heart is got lvh and his upper strength is going so I'm confused at the fact that he is weak and there are so many risks but yet he is strong enough to get it done. And his bones are so brittle we have broke 3 bones just getting dressed and falling over. I'm so scared.

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