Monday, December 10, 2012

Non-congenital laryngomalcia

Ollie had a good day breathing wise, he didn't need any morphine or supplemental oxygen. :) We had a lot of smiles today too. That makes us all very happy here.

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.


  1. Glad to hear Ollie had a good day today! His smile is priceless! :) I'll keep praying for more good days.

  2. So Glad to hear Ollie is doing better and those Smiles of his are PRICELESS!! <3 My Thoughts and Prayers are ALWAYS with you ALL!! <3

  3. Love this picture...