Sunday, February 8, 2015

Once again, we’re not there yet….

Greetings All,

Once again, we’re not there yet….

Last post, Amie was still tangentially with us, still able to track you with her eyes, and had minimal responses.  She would give you little hand hugs, and would grunt at you if you were making her upset.

We’re now in coma-ville, with zero reponsiveness, starting late Wednesday night.

We were awoken early Thursday morning (1am-ish), with Amie making a noise (and I’m not being a jerk here, just for descriptive properties) that was exactly like the zombies on the Walking Dead.  We were absolutely sure that she had come to her end, and we were ready to meet it.

But she calmed down, and fell back asleep, and we did as well.  Hospice came in on Thursday morning, and we transitioned into IV morphine, every 2 hours, for pain control.  Yes.  Every 2 hours.  As you might be imagining right now, this swings us back around to the very first days of having Amie in our bedroom, with Shelley breastfeeding.  Only now, she’s taking care of her on the way out, instead of the way in.



So, we’re now in day 4 of coma-ville, and Shelley is giving her all the meds, as she has since diagnosis.  I offer to help, but to quote Shelley, “You’re pretty much worthless in the middle of the night, and you’re going to wake me up anyway, and I’ll be worried about Amie.”  So, this process is pretty much grinding her to bits.

Hospice came again today to deliver more morphine, as we were running out.  Kathy said that Amie could realistically go any second, but then again, she could last for a bunch of days.  We really have no idea.

I don’t think I can possibly explain how strange, and heartrending, this situation has been over the last 4 days. Amie lays on her mattress in our room.  She breathes, and then she stops.  Sometimes her pauses last for more than a couple minutes.  You say to yourself, “Ok, that was it.”  …and then she has this ripping gasp, and breathes again.  And keeps breathing.  For hours.  You convince yourself that everything is good, until she stops breathing again.  Rinse. Repeat.

It’s so surreal too.  She’s Amie.  But she’s just not moving, not her, not what I expect, and not responsive.  (If I was to say she was like furniture, that would be a really poopy comment, so I shall not make it.)

But through all of this, Shelley has been amazing.  She’s been sitting with Amie for hours and hours a day.  She cleans her, rocks her, hugs her, and is just present with her as much as possible.  Me?  I am doing my best.  But any time I spend with her is like getting beaten, emotionally.  It. Just. Hurts.  …and I know that’s about me, and not about Amie, but I am really doing my best.  Shelley is too.  We all are.

So.  That’s where we are, and that’s whats going on for the moment.  We’re in neutral, waiting to go to the next stage.

The thing that no one tells you, and you’re not supposed to talk about, is there is an upside to this end stage.  Your life has been hijacked for X months, and you’ve dedicated every cell, every moment, every thought to how to help make your daughter survive this.  But you lost.  Suck it up, and move along.  But you’re free to go home, lick your wounds, and figure out what comes next.

Except we can’t.  It’s like we’re stuck at baggage claim, waiting as the same suitcase goes round and round, and hoping that you’ll see yours poop out any second.  Yep.  We’re still waiting at Baggage Carousel #14.



Anya has decided that Amie's friends need to be watching over her.  This is Cardinal and Bianca.


Anya thought that having Amie hold some of the hearts was a good idea.  We've been having her hold hearts for a few days now, so a certain few of them have certified Amie juices on them.


Of course, Amie's constant companion has been Baby Jumping.  So. Good.



More than anything else, we've been holding her hand.
We didn't want to post other pictures, because that wasn't going to add to anyone else's positive experiences.  But Amie's hand is still warm, and maybe she can still gain some semblance of comfort from holding our hands.


OK, y’all.  Enough playing with words for me, and time to wade back in to my reality, instead of riffing on my thoughts.