I have a 1 year old that was born 10 weeks prem with a defect in her airway. I have an ENT surgeon, a pediatrician, a speech pathologist, audiologist, pulmologist, respirologist, occupational therapist, and another speech pathologist for swallowing. the problem lies with too many doctors and too many ideas. She was born with an extra broncial (hope that is spelled right) tube that doesn't fully attach to her lungs. so, when she was born, her airway was obstructed by 90%...and this was drained. another few surgeries (she has had 6) were made to increase the size of the hole of this malformed airway so that it drains and does not fill up any more. now, that part is taken care of by her surgeon who is actually very highly reccommended in our community. but, she has had many other health issues that her doctors dont agree on. she had very bad reflux, she does not swallow properly (had to have fluids thickened), had had many lung inflections including pnemonia, many many episodes of 'croup' that are unexplained, and RSV. Some doctors are saying this is because of swallowing issues and everything is going to her lungs and causing these problems....where others are saying this is because of reflux coming back up into her lungs. She coughs all of the time...drinking,sleeping, playing...doesnt matter. I have also been told she may have an immune defficiency. now, each doctor sends me to a different one to fix the problem and I am getting no where!!!! I end up sitting outside with her most nights because of the croup (no idea if that is spelled right either)...because the cold helps her to breath. I have explained this over and over again...and I am not getting anywhere. I just keep getting help with the symptoms and nothing is being resolved. I have been told to try different inhalers and then a different doctor will say that it wont help and takes her off (I agree, the inhalers did nothing). I am hoping you can help me out a little. Thank you.
This discussion is related to appropriate type of surgeon