I AM EXCITED

GUYS

I got to go home for the first time in like forever today!!!!

Maisie has been extremely on-again, off-again this hospital stay and even Jeff was more than willing to stay with her (and oftentimes both of us were there) I was afraid to leave Maisie lest something happen to her (she's at NYPSC -- the pediatric specialty care hospital in NYC -- so she's like two hours away from home.) BUT she's been really stable for the last few and I really needed to shower in my own bathroom. Like really really really. GOD I missed my shower gel! And my loofah! And my mirror!

(obviously Jeff brought me stuff like soap and towels and a change of clothes but I mean there's only so much a man can do.)

This was the first time since Maisie's hospitalization that I actually went home. I left the hospital to go get food and some stuff from CVS a few times, but other than that I really haven't left. So it was AMAZING to be in my own house again.

I packed like a freaking sherpa while I was home. Ever since we heard rumors of a trach, I've been obsessively reading this blog. And I laughed like a hyena when I read this post. It's so true!

I brought a suitcase for me with jammies, fresh clothes, dryer sheets to keep everything smelling nice, my favorite lotions and and soaps and washcloths and towels and food and just...a lot of stuff.

Then I packed a suitcase for Maisie full of fresh clean clothes so she could get out of the hospital gowns. I packed literally almost every toy and movie and book we have. I brought her huge collection of button buddies so we could stop relying on the itchy gauze pads. And I brought her "Maisie the Great" sign that my mom made :)

Maisie herself has been doing okay. She's still working very VERY hard to breathe over the vent, even though it is obviously very hard for her. It's very clear she hates the vent and wants off of it.

Exhibit A: Four times Maisie has clenched the tube in her little fist and yanked. She has very nearly completely extubated herself twice.

Exhibit B: Maisie figured out about a week ago how to disconnect the endotracheal tube from the ventilator and has done so several times a day. Now she's got No-Nos. I don't know why she's surprised.

Exhibit C: The ventilator got moved a little closer to Maisie than it usually is so that a nurse could get to the wall, and Maisie managed to kick the vent over and break it. Luckily it was fixable and the portable vent was sufficient until she got hooked back up to a stationary.

Maisie the Great Troublemaker.