Here’s what I wrote on Facebook, which was exactly the same as what I sent to family that day.
Just before the lights went out
We sat up and talked about
All the things that we would be
I just wanted him to be with me
But he had a mind of his own
And he did not mind being alone
Left me there in our little world
Left me there like a little girl
He said don’t get hung up
Hang ups will get you down
He said don’t look back
Look up and then look around
Looks like it’s shaping up to be another slow day of rest here. I’ll take a slow day of rest with very small movements forward, though!
He’s off one of the breathing meds (although I believe he’s still hooked up to the machine, just in case, but all of it’s settings are on zero), but he still really doesn’t like it if he’s flat on his back, and that’s holding up a few things. They want to take one of his lines out that’s in his leg, but he has to lay flat to do that, and he can’t lay flat without coughing. They want to get a CT of his abdomen, but he has to lay flat to do it, and… see above. But the line doesn’t have to come out this second, they just had it in if they had to hook him up to the ECMO and they’re not going to do that, so they can take it out… and the gut doctors have said that the CT is more out of curiosity than necessity, they just want to see what’s going on, so that’s not an emergency either.
Speaking of nutrition, I was still eating well. Not bad, for someone who had zero appetite….! I was doing a lot of … grazing. I’d pack a full lunch of cheese and meats and olives, and then … eat two or three mouthfuls, and put it away. A couple of hours later, eat a few more bites, put it away. A couple of hours later, eat a few more bites… and so on.
That time I was feeling high
Like I never had to try
To kick myself up out of bed
Kick these worries out of my head
He said it’s better this way, yeah
One day you’ll understand
He said I’m leavin’ today and
He let go of my hand
I know that I’ll never see him again
I feel the same way that I saw him then
I know that when I get back on my feet
I will walk away from misery
They are going to look at some IV nutrition over the next 24 hours, I think they called it TPN… let’s see, I’m trying to stay off Doctor Google, but let me just look this up and nothing more… “Total Parenteral Nutrition (TPN), also known as intravenous or IV nutrition feeding, is a method of getting nutrition into the body through the veins. In other words, it provides nutrients for patients who do not have a functioning GI tract or who have disorders requiring complete bowel rest.”
I’m going to call that Total Parental Nutrition forever, now. Of course, I’m also calling his pneumonia, Kielbasa Pneumonia, because I keep reading the other word too fast. Mmmmmm. Kielbasa…
Is that everything? They’re going to wean him off the Versawhatever, and put him on the Percawhatever (maybe ends in “dex”?), over the next day, which will still manage the pain but also make him a little more alert. It’ll be nice to have some eye contact! And we’ve booked Linda a flight home for tomorrow; it’s been such a gift to have her here with me, but I suppose I need to send her back to Bill at SOME POINT… 😉
Our friend Robyn just came by; she’s a nurse here at Shands, so she’s got Access. She’s the one who sent our fourth floor nursing staff an Edible Arrangement, and she sent another one here to the seventh floor (let me see if they’ll let me snag a picture of what they haven’t eaten already!). And then the Edible Arrangement guy wasn’t allowed up, so Robyn ran over to meet him and bring it up herself, and that made me glad becasue first, a Robyn hug is always a good hug, and second, everyone got to see her and thank her for the fruit and chocolate!
I think that’s about it for now. Slow day, small, almost imperceptible baby steps forward. I’ll take that.
What do you say when it’s all been said
How do you feel when it’s all been felt
Where do you go when it’s all gone
And you don’t care enough to carry on
Well, I say close your eyes
Look down deep inside
Someone is there for you
Someone who cares for you
Well, I know it’s easier to say then do
Easier to look away than see it through
I know it’s easier to think than feel
Easier to make it up than make it real
Since Linda was going to leave the next day, I did what I never did — I took a long lunch and I walked around the hospital campus. It really is a sprawling place, and very nice in spots. It’s too bad we were there in the only cold time in Florida, haha, I was too chicken to do what I saw others do, and go down by the little pond and sit and eat lunch every day (not to mention not wanting to leave Tim’s side). But this day, I did, and I took some lovely pictures – including that one way up there where I circled Tim’s window. Not that he could see out of it, but I could. As someone who needs to see a little nature every day, that view kept me a little more sane than I might have been without it.
And when I got home that night, there was a little present waiting for me from a friend. My friends really kept me together during all of this. Oh! Speaking of friends! Sharon had messaged me a couple of days before this, to tell me that she was coming down and would be staying with Denise and Tarrant. And here’s how far out my brain was from reality… I wondered why she was coming down. Was she coming down for GLAM? I know she got accepted. No, wait, GLAM was last month, and I was even there for it. Of course it’s not GLAM. Is it another show? Is she doing a show in Jacksonville? Is that why she’s staying with Denise and Tarrant instead of Val and Lala? Is Chris coming with her? I hope that she feels comfortable seeing me, what with all the time I’ve been spending in the hospital lately. I don’t know why she’s coming down, but I hope that she has a few minutes for me. HAHAHAHAH. Jenn was like, Sweet Zombie Jesus, you’re a ding-dong. SHARON IS COMING DOWN BECAUSE I NEED HER. She had read the ECMO Day post out loud to Chris, and they sat there and looked at each other, and Chris said something like… “let’s get you a plane ticket on Thursday.”
I love my friends.
Even when I’m too overwhelmed to be smart.
Oh it’s hard to love
Oh it’s hard not to love
Lyrics by Edie Brickell