Wednesday, April 30, 2014

Last week on...

I felt like I needed to give y'all an update on things, as I've just kinda left you hanging.

A typical day in the PICU:

  • 7am(ish):  The junior level main doctor handling your case (Neurosurgery, Oncology, Hematology, etc) comes in and talks to you to ask you how things went overnight.  They ask you specifics, and do a general look-see about Amie's body.  They do some simple tests with her hands, feet, and eyes.
  • 9-11a(ish):  The full Doctor team comes in for what they call rounds.  The junior doctor leads the session, giving them their vision of what's the current situation, and where the treatment will go for the next 24 hours.
  • Amie has a 1 on 1 nurse, for most of the time.  They sit right outside her room in this area that they can see directly in her room.  If you need something, or one of the alarms goes off, you can just give them a hand sign and they're in the room.
  • The nurses come in and do vital signs most every hour.  That's blood pressure, temperature, check her ICP level (intra cranial pressure) to ensure that she's not bleeding internally, and checking her eyes for dilation.  If she's sleeping, they might delay for an hour, but there's a lot of waking up and testing.  
  • We order food from room service.  We go get food from the cafeteria.  We eat the food that people have brought to us.  Food is a surrogate for life and joy.  Eating is FUN!
  • We're sleeping on a bed/lounger in the room.  When we can.
  • There are laundry facilities and a shower as well.  We get stinky.
So, with all that said, how's Amie doing?

Here is Amie waving.  Her left hand is rocking the world right now, and has become her dominant hand.  Prior to the surgery, we were noticing a LOT of tremors in her right hand.  They're just as bad or worse right now.  So she's using her left hand, or just opting out of using her hands altogether.

Additionally, she's still got a lot of "poofiness" in her face, as we like to call it.  I'm sure those of you with medical training could explain to me why the left side of her face is more swollen, but we're just calling in poofiness.  It went away quickly last time, and we're assuming this time it will as well.

She's talking, reporting her pain, "feeling lonely" in the bed by herself, and asking for people to come lay with her.  She's watching a vomit inducing amount of Netflix kids shows right now, but we're not objecting.  We keep trying to push her towards educational shows (Super Why!, etc) or at least slower paced shows (Calliou, Kipper, etc) to help her sleep...but she's got a crack-like addiction to Strawberry Shortcake and Friends.  (ACK!)  There could be worse problems, right?

But for the most part, this is what we see.  Slumbering Amie. Snoring Amie.  Healing Amie.

More when we know it.