Unfortunately, like other MLD children, we believe he's losing muscle tone in his airway. This is leading to the labored breathing from either laryngomalcia or pharyngomalacia, or both. Basically the structures in his throat are blocking his airway, it's also called a "floppy airway"
Learn more about laryngomalacia here
Treatment options include surgery to remove the floppy tissue, which wouldn't work in Oliver's case, as he's losing muscle tone everywhere, or a tracheostomy. Any anesthesia for Oliver at this point is dangerous, there is a risk of him not surviving the surgery. Not to mention pain, risk of infection and quality of life issues associated with a trach. At some stage in the disease many MLD kids need CPAP or BiPAP machine to keep the airways open and help them breathe.We'll cross that bridge when we get there, but for now the morphine and repositioning are working. Let's hope for lots more smiles tomorrow.