Last I wrote we were feeling pretty confident that Lillian would get decannulated by November. Well, I haven't written here, just because I've been trying to digest. We went back down to the pulmonary team last Monday. At that time, they determined that it was unlikely we would get everything done that needed to be in order to decannulate. PTL I had my friend with me to distract me on the drive home, but when I did get home and alone the news settled in. I really struggled on Monday and Tuesday, but come Wednesday, I thought I had a grip on it- until- during her feeding she started to cough....which led to the inevitable vomit fest. Each time I bumped the trach trying to get her shirt off, it just made her puke even more. I totally lost it. So, Wednesday afternoon, I sobbed into a towel while our wonderful DT listened and comforted.
During the session we chatted and I guess I just needed to get that out, as she worked with Lillian, the phone rang....it was the sleep disorder center...they had a cancellation for Friday and could get Lillian in. There was lots going on this weekend, including me being the guest speaker at a Women's retreat. Needless to say, God worked it all out. (as usual) She had her sleep study, which we don't know the results of yet, BUT, they were able to cap her for the second half of it. I think that alone is positive feedback!! YAY! We should hear something by Wednesday. She has also tolerated the cap here at home for 25 minutes and I only took it off because they only want us to do it for short periods of time at first. I realize, that decannulation still may not happen in our time, but at least things are headed in the right direction, seemingly.