HI! Sorry your grandson and family are going through such a rough time. This sight helped me get so many answers when we went through the similar thing with our newborn. We did not leave the hospital until we had an apnea monitor, and sling/wedge combo. We also insisted on an appointment with a pediatric pulmonologist and pediatric ent dr.
These appointments were key in monitoring the laryngomalacia. The ent can insert a small camera through his nose and down his throat to see how severly inflammed the tissue is and how badly it is covering his airway.
Some babies have to have the tissue removed, but usually they don’t mess with it because it grows back. The reflux inflames the tissue and depending on the baby’s positioning, the extra tissue “flops” over the airway. It is like a vaccuum getting sucked in with every breath and it does sound horrible! My daughter had blue spells it was so bad. Placing her on her belly helped alot, and upping her dose of prevacid to 30 mgs helped alot too. She never laid on her back because the stridor was so bad.
The pediatric pulmonologist did a bronchioscope to make sure everything was ok anatomically. He also prescribed breathing treatments- pulmocort to strenghten her lungs and xopenex when she was having trouble breathing. We used these at only 8 weeks of age.
Another mom here has been kind enough to post articles on the topic and there are many past posts with others going through the same thing. I hope that I can help alittle, if not speed up the process of getting some good help!
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