premature baby with airway problem

[sarahs_mom]

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 (pneumonia), 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.

[Smilerdeb]

I dont know if it is of any help to you Sarahs_mom, but I work on Aged care Acute Dementia and most are fed thickened foods due to them being unable to swallow properly.
It is correct that Pneumonia can result in the foods not being digested or swallowed properly and that is why the elderly are given 'thickened foods and drinks'.
If the foods are taken down too fast then a form of bronchial asthma arises in the elderly.
Is your baby on oxygen during the night at all, to help with the breathing?
The croup has nothing to do with reflux to my knowledge.
It is the narrowing of the airways to the lungs that causes croup with someone who has these problems.
I cant help any further, I'm sorry :(

[JolieFille]

A couple of suggestions from a previous NICU nurse.

TE Fistula, has it been ruled out? There is a J TE fistula that is a bugger to diagnose.  It presents with symptoms that you have described.

Have you tried a feeding clinic at a university based hospital?

You have a complex history.  Coughing is inflammation.  The source is likely to have many factors.

Is your baby on a cardiac apnea monitor to watch o2 saturation?

Finally, there is a neonatology DR. forum here to ask questions.  There is also a pediatric forum too.

Good Luck!

[sarahs_mom]

thank you for all of the advice. she does not have a fistula as that was ruled out by the contrast swallow die, a CT scan and 2 MRI's. she isn't on a sat monitor...but has many sleep studies and is often under 80% (causeing seizures).  how do i ask for help from the pediatric doctor? i'm new to this site and would love any help I can get.