I woke up this morning (after sleeping TEN hours in the waiting room, yikes) and came into Mallorie's room to find her waking up, stretching her arm high above her head. She has been more and more awake today, which is great for us - not so great for her, as she needs to wait till tomorrow before she will have the tube out - so they will probably give her small amounts of sedation through the night to allow her to rest. She seems to be telling us she is READY to get the tube out, now that the seizure medications are getting out of her system.
Mallorie also has been getting milk all day through her g-tube, so I'm sure her tummy is feeling good. I was telling the nurse today that it feels like she has been doing a little Sleeping Beauty thing, and it's been good for her. The skin on her bottom had been pretty bad, since she'd been on antibiotics a few weeks ago, but here she's had a catheter in, and has had her diapers open and the nurses have kept air blowing through a tube onto the skin, and a wound care nurse gave some suggestions to try at home in the future, like chamomile tea directly on the skin. Her eye has been faithfully treated with lubrication and kept closed, since she's been asleep all this time. There is a white "patch" that is over the area of the ulcer which we are just leaving be, and putting the lubrication over it. I think it's some sort of scar, and I have to think that is a good thing. It's what the eye doctor said to hope for.
So no seizures, still some fever (I don't think it's hit 102 today). And planning on trying to take out the tube tomorrow.
She's had some amazing nurses this entire time. Allison in the day shift, since Mallorie has been here, and Megan at night. They advocate for things that matter to me, and make me feel safe going to sleep in the waiting room at night, and going to church today. Both should have a day off, starting tomorrow, but for tonight, I know Megan will be hovering protectively over Mallorie while I get some rest.
And today, a comical respiratory therapist who has me in stitches, whenever he is around. The last thing he said before he went off shift, was to the other therapist who had helped him suction and retape Mallorie's tube. If you were single ... and weren't my cousin ... you'd have to watch out. They really are cousins. Because of Tim, and the way he's been messing with all the people around him today, planning on making quilts like Mallorie's for the "Man Cave" that he and another therapist are creating, .... I've laughed so hard today, and it's a great thing.
That's it. All good news. Oh, and she's out of "droplet" isolation because the tests have all seemed to have come back negative, even for flu. Not that she didn't have anything, but she's at least negative for the things they would isolate for.
I hate that I can't show the pictures I got of her today in the big-girl bed, and moving her arm all around as she started to wake up. I can't use the cell phone for pictures in the PICU, because the phones have to stay off. And even though the kids brought me a cable for the camera today, I can't figure out why it doesn't work to download the pictures.
The Trisomy 18 Connection
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