Friday, November 20, 2009


What's this, you ask? Did someone have a little bit of a move last night? Did someone perhaps find herself a new room? With a CARPET?

Why, yes. Yes she did.


Jane's latest digs!

It was the weirdest feeling this morning, washing my hands and then turning to the right to go to the carpet side of the ICN after four months on the tiles. I'm just happy that Jane's in a quiet spot with a window. If the kid can't be outside, she should at least get the chance to see it.

After we got ourselves oriented, it was time for the big meeting. Got a rundown from Dr. Congenial and Dr. D (who is on this weekend, and then is attending for the next rotation) on Jane's current status and their plans for weaning her on the steroids and making some headway in weaning some of the vent settings, but it really it was TRACH TRACH TRACH.

As Tom just this second put it, the struggle is with what the trach represents and not so much the reality of the trach itself. That we could be looking at a year (or, god forbid, longer) of Jane being on the vent.  That Jane's lungs are so bad that this is what it's going to take for her to keep going.

So now (OF COURSE) I'm worried that we're waiting too long and causing Jane distress -- poor thing is gagging on the new tube (it's bigger and less flexible) -- and that she's going to develop an oral aversion and that the window of her ability to learn to eat is closing and and and...

This sucks.

My angst aside, it was in fact a good day. Nice snuggle, punctuated by a fairly spectacular projectile vomit. And then? And then? Donna set a NEW DAYTIME OXYGEN RECORD, and tied the all-around record of...


Bring it, Angela.

1 comment:

artandsoul said...

Wow!! 28! Wow, wow, wow!!

My heart goes out to you being in the situation of choosing and waiting and facing all that is in front of you. Every day it is a new place to be standing, and its so totally NOT what is expected once you've had a kid and are ready for this next one and so on.

But the new ground you are breaking is filled with amazing goodness - every time I see another picture of Jane's precious face, her bright eyes, her little amazing self, I am struck by how truly wonderful she is! And all of this rigamarole is the amazing stuff of her life right now - and so of course, you go through it.

You have a very precious and beautiful baby to shepherd through some crazy experiences. What a mom you are!

Oh, and nice digs!! Love the natural light! And the carpet!