Tuesday, 10/4

I really am trying to close up this blog so just a reminder that the main posts will be on www.edisonathome.blogspot.com.

It has been a long, long few days. You know it's been a long few days when you hold your cell phone up to your ear for a while waiting for a dial tone. Things are okay, but not resolved. They took Edison to the O.R. today to dilate his esophagus in case that was making him pool saliva and get choked. It's not, his esophagus appears fine. While in the O.R. he turned blue again and completely stopped breathing for about 15 seconds. Our surgeon described it as a "functional" issue because his tracheomalacia (the floppy airway) is just so severe the smallest thing can make him lose coordination. When we asked how you fix this he said that you fix it the way nurses in the 1940's fixed babies with the same issues, close supervision and being very careful. So basically we just have to wait it out until his airway gets stronger. Let me tell you, that's a scary place to be.

So they will plan to do a sleep study later this week to really examine what all is going on. In the meantime, our little boy, who's 8 months old today, continues to smile and charm us all. Thank you all for your calls, emails, and well-wishes of support. We love you.

Monday, 10/3

I don't know where to update anymore because all of our chapters are getting mixed up! Unfortunately I need to be brief because we are waiting for the surgeon, but Edison had to be readmitted to the hospital yesterday. Our home health nurse came out for a visit and Dinky started to get fussy and then turned blue, which he hasn't done in months. It was very scary and EMS was called and it was frankly my worst nightmare. So...we're here. He's back to normal, in fact more normal here at his first "home" than he was at home home. So we're waiting to talk to the surgeon to find out what he wants to do. I'll definitely keep you posted and update when I have more thoughtful time to write.