Thursday, November 5, 2009


And I don't mean the kid.

Good news: cystic fibrosis test NEGATIVE. (Yes!)

Bad news: suddenly, tracheostomy is on the table. (WHAT?)

Tom and I are having a meeting with Dr. Congenial tomorrow to talk about what's been going on and where we're going. One of the places we may be going is a trach. You know, a hole in the neck so they can stick the vent tubes in there and get all the hardware out of Jane's mouth.

I just... I mean... HONESTLY. I've been very patient here. Invisible readers, most of you don't know me in the real world, and trust me. I've been the MODEL of patience these fifteen weeks (fifteen WEEKS) and I am just about DONE. I've had it. Seriously. HAD. IT. Do you realize why we've reached this point? In my completely not-humble and pissed-off opinion, we are here because THEY HAVE SCREWED UP. They blew it with the nitric wean, and they've dicked around one time too many with the ventilator settings. And who's paying the price? JANE.

So, yeah. I'm pissed. No decisions have been made, they've just started considering this but I'm not having it right now. Just... no. Hell, no.


webmaster said...

She's getting more beautiful by the day, though, isn't she? Sorry you have to keep going through more BS. Keep on hanging in there.

mommatosena said...

Tia hugs! This is a hard thing to hear and I know that it's not what you want for Jane. Tom this is what Tasha dealt with as well so she may have some helpful hints or advice on this one. Just know that loads of prayers are flooding your way. I was really hoping to see that you had a rockin' day; and not in the boat rockin' world crashin' around you kind of rockin'. This sucks and I wish it wasn't part of your living.

artandsoul said...

Loads of prayers, and hugs, and support. I can't really imagine what you're going through, but that doesn't stop me from rooting for you 100%. I, too, wish better news for you all soon.

She does, however, keep getting cuter by the day...that's for sure.