I have made it a habit to mispronounce/make up several medical terms over the past few days. I am looking forward of putting this one to rest: “Stenosis of the Foramen Magnum.”
(Side Note: Alveoli are the tiny air sacs in the lungs where the exchange of oxygen and carbon dioxide takes place. Aoli, on the other hand, is a mayonnaise-like dipping sauce. For the record, Ben only has one of the two in his lungs, despite what I have been saying.)
One of the working theories about Ben’s restricted airway was that he had a Stenosis of the Foramen Magnum. The Foramen Magnum translates to “Big Hole” and is this guy, in red:
A condition some children with certain genetic disorders can have is a Stenosis of the Foramen Magnum, which is essentially the narrowing of this hole, and that can present as a restricted airway. Today Ben had a solid few hours of MRI's and X-Rays and the result of the MRI showed that he does not have the suspected Stenosis that I have been mispronouncing. While this is mostly considered to be good news it certainly leaves more questions about what is restricting his airway. The next theory is that his muscle tone is too low to enable him to breathe on his own. This can be be related to a thousand different issues, so the focus is on determining what the underlying issue is and then addressing how to get him breathing on his own, as well as evaluating the implications of whatever we determine the underlying issue is.
Ben had a busy day of tests and we expect to get a little more information tomorrow than we did today. We hope to get to start holding him tomorrow or Friday, in the meantime we are administering love by hovering:
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