Parker had his scope today and well.....he was not decannulated. We are home and well kind of in a daze. they have now said that Parker's cords are not moving much at all. In October it was said that one was moving almost 100% and the other was moving just not correctly. Now just 6 months later no movement at all. Two different doc's opinions I guess. I can appreciate the recent posts about diagnosis. What exactly is the good of a diagnosis if it's ever changing.?!?!?!?
I'm really frustrated. He's wearing his valve all day, except for sleeping and takes his trach out frequently and does ok. Shouldn't that mean the cords are moving? Maybe that just means he has enough room around the trach to tolerate the valve, and nothing has changed from the beginning with the cords. I think I'm gonna call for a consult with ENT and PUlmonology and get my thoughts together and figure out what next. They say wait....I hate waiting....especially with no plan!!!
Sorry to vent, Just tired and frustrated. OH did I mention he pulled out his IV and there was blood everywhere, including all over mommy. They to Daddy where he puked all over him. Nice car ride home I might add. LOL!
P's always loving MOM