This is obviously a very difficult problem for you and your doctors. It is very important to identify the problem. Only then can the best treatment be determined. It is impossible for us to figure out the problem just from your description. There are several different problems that can cause the types of symptoms you describe. I would suggest working with a pediatric pulmonologist. You might see if it is possible for you to bring your baby to National Jewish Medical and Research Center for an evaluation if this continues. I know this must be frightening for you. You need answers and relief soon.
It sounds like you need a second opinion by another pediatric pulmonologist (lung doc), soon, because he's not getting better, with the present treatments.
Also, ask about possible pediatric gastric reflux, in case your baby is maybe choking on "refluxed" stomach liquid. Have you tilted the baby's mattress (higher at the head end), so that his head is higher than his feet? Has the baby been seen by a pediatric gastroenterologist (stomach & digestive specialist)?
I wish you the best of luck, helping your baby to get better. You should take him to your ER (emergency room), whenever he has breathing problems, or, call for an ambulance, if necessary.
Concerned lady
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