12/1 - Update - Conversatin'

Wow -- I can't believe that I haven't posted anything since LAST MONTH!! Ha, ha, ha!

Sorry 'bout that silliness -- So we are still here. Today was full of conversation. We are sort of in a difficult spot where everyone is trying to determine when we should go home. We feel comfortable with Emily's current level of care, but we don't want to leave too soon and end up right where we are in no time at all. Our experience with SMA is that each of these sicknesses fast forwards our time with our baby. We brought Emily to the hospital with an acute problem (collapsed lung) and now we appear to have moved back to Emily's typical chronic issues (rigorous respiratory care with periodic plugs and thick secretions) with some different dependancies. Since we are still in the PICU when Emily has any respiratory issues it looked as another acute issue when it may just be typical Emily. They MUST see things that way in the PICU though, and we understand that, but it may not be the best for helping Emily. She needs aggressive respiratory treatments when she has problems if she is going to get "better."

I'm not criticizing the PICU, they're great, but we've gotta have an "exit strategy" and we sorta have to help everyone understand when we think Emily is ready to go home.

Anyway, I'm writing this from my cell phone so I'm gonna stop here. My fingers are getting tired.