Three weeks ago my five month old was diagnosed with hypoventilation, tracheomalacia and bronchomalacia in addition to tracheal stenosis. His numbers are fine (PO2, PCO2,bicarb, and pH). He is currently on 1/2L of room air via nasal cannula. He has never been intubated or on a ventillator. A feeding study revealed aspirations while he was eating. His pulmonologist is recommending a tracheostomy and a ventilator. This seems over kill to me??
I assume that your son is under the care of a Board Certified Pediatric Pulmonologist. If not, your first step should be to request that a second opinion consultation be requested of such a specialist. If that description describes his current pulmonologist, the first step should be for you and your family to request a face-to-face conversation with him/her so that you might better understand the basis for the recommendation of a tracheostomy and a ventilator.
If at that point, after you have had the opportunity to ask questions and consider the answers to those questions, if you have any doubts about the necessity of a tracheostomy and a ventilator, you should request a consultation/second opinion, preferably one from the Division of Pediatric Pulmonology at the nearest academic/university medical center or at a large respected organization such as the Mayo Clinic. Your current pulmonologist and your son’s pediatrician should be able to assist you in making these arrangements.
The following, from one of the most respected textbooks of Pediatrics, may be of interest to you.
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