No steps forward - two steps back?

Luther's feeding tube is intended to give him extra calories.  Unfortunately, since it's been put in, that hasn't been the case.

First off, I am not a gentle nurse.  I'm learning to be one.  

So think of this tube coming directly out of his stomach.  What goes in also comes out...  

The end of the tube is like the end of an inner tube or floaty thing you blow up and put in the water.  You snap the end back in to the tube to make sure nothing comes back out.  

My mom is really really good at tiny, fine detail work whether it's knitting, sewing, darning.  That talent skipped this generation.  So I'm trying to bend the tube so the gooey watery stuff doesn't come out, I'm trying to snap open the top without pulling it too hard then put in the syringe with my big 'ole man hands. (Don't get me wrong, I like my hands just fine)

The first time I did this, I pulled on the tube and sent Luther through the roof.  :(    

The first night we fed him - two nights ago, he became super bloated.  Ok, I'm just going to get down to it here and say it:  he couldn't fart or burp enough to make himself feel better.  He didn't want to eat at all because he felt full but he wasn't full.  The only thing he'd eaten was this milk stuff.

We figured out some stuff.  I'll spare the gory details (laxatives) and he got through the night.  However, we did it again the next day - fed him more gooey milk stuff and the same thing -- feeling full, bloated -- so he doesn't want to eat real food.  

I bet today, he's had maybe 1200 calories.  While he was in the hospital, he had to fast for the surgery.  He hasn't eaten much of anything in the last four days.  

My skinny patient.

Feeding tube - Friday night

Luther's home.  He's downstairs eating a Big Mac.  That about sums it up!

The surgery went well.  His stomach really hurts but that's expected since he has a hole in it now with a six inch rubber tube coming out of it.

He'll be fed 3 cans of a chocolate milk-like substance.  You could drink it if you were starving in the desert. Since he's not starving in the desert and still able to eat Big Macs, this stuff is simply additional calories.  750 a day, I think.

The bag is like one of those saline hospital bags you see hanging from an IV pole.  I'll pour all 3 in one bag and let it drip in to his six inch rubber tube for about 2 hours.

I have this giant syringe I could put in to the tube which is quicker.  He's not ready for quicker quite yet. Slow steady drip of milkshakey gunk for now.

The big twitch

Luther goes in for his feeding tube tomorrow.  He's nervous about the procedure.  Apparently, they stick a camera down his throat, which does sound pretty icky.  I keep telling him it's usually an outpatient procedure - as if it makes it no big deal.

I get that it's a big deal.  I think sometimes, in the face of bad things, we try to minimize the badness.  Instead of telling him, yeah it sucks, I say, it's all going to be fine.  We try to find words that might somehow soothe a soul when instead, we should allow some space to acknowledge fear or sadness.  I have told him it's ok to be afraid.  And it is.

I'm working throughout his hospital stay.  I feel awful about this but it is what it is.  I keep thinking how - in the scale of terminal illnesses - we're somewhat fortunate that he's a veteran because ALS is considered a service related illness and so much of the expense related to the disease is covered by the VA.  Fortunate because my work has been really flexible with letting me come back to a store closer to home.  But I'm feeling selfish with my time.  I want to be with Luther more.  Damn you bills and insurance and those pesky every day things that I couldn't afford if I didn't work!

Luther woke me up at 5:30 this morning with his cough.  It's a constant, now.  If I don't hear it every hour when he's awake , I worry.  I went downstairs to get him some water and decided to crawl in to the twin bed with him.

He wrapped his arms around me and I could feel that fasciculation in his arms.  The big twitch.  I remember reading a Stephen King short story where this man's hands would detach themselves at the wrist and go off and do dastardly things in the night.  That's what his arms reminded me of - these twitchy, living things that seemed separate from the rest of his body.

Oddly, it's quite the opposite.  The livelier his twitches get, the more his muslces are degenerating.

I don't write much here.  It felt good, for a time, to blurt out all these new, scary, weird thoughts about dealing with a terminal illness.  As if, somehow, by writing, I'd shove the feelings out of my head and in to the internet ether, those feelings would dissipate.

But lately, not so much.  I feel myself putting up a protective wall and hiding behind it.  Plus the fact that people reading this see just a snapshot of our day.  Of my angst.  I might post some awful, sad, melancholy thing and within an hour I might be grocery shopping.  But I don't come back and write that life turned itself right side up and things seem ok for a moment.  Sometimes it feels to hard to explain things, to actually have to sort out feelings.

Sometimes feelings suck.

.

Not much is happening....

Not much to report.  Lots to do.  Nothing done.

What a beautiful day!!

Easter.  Getting ready to go to mom and dad's.  It's the first really real warm spring day.  Our windows flung open.  What a difference sunshine makes.

Yesterday, at work, I couldn't get a hold of Luther.  I knew he was sleeping late.  By 12:30, I was worried.  I called my parents and asked them to check on him.

Luther stays in the basement, which I know sounds awful.  But it's a walk-out with big french doors.  He gets some of this awesome sunshine!!  But I had this vision of my parents peeking in the door like spies, catching Luther eating lunch.

I've mentioned this before, my family is the best.  When I called, worried, no questions asked, my parents buzzed over to the house to check on him.

He was still sleeping.  They all had a little chat, my parents hauled the deck furniture from under the deck up to the deck and left.

It did make me realize Luther and I need a system.  Not sure what that is quite yet.  We're getting the "help, I've fallen and can't get up" thing.  You need a land line, though, so we're getting that re-installed.  I worry though, that he can't lift his arms or grip - so how does he lift his arms to press a button??   Once he's in a wheelchair, he'll be able to press buttons on the chair with his knees or his toes.

Anyways, I'm rambling about stuff that doesn't need to be rambled about this sunny afternoon.  My green bean hotdish is ready to come out of the oven.  Time to go!

You can snuggle in a hospital bed!

The hospital bed moves all the time.  It sounds a little like Darth Vader - heavy mechanical breathing - air forced in and out as the mattress inflates a little then deflates a little.

I got home from a long day at work.  We went out for burgers, went to Target to get sheets for the new bed. The usual stuff, that day to day stuff you get done.  Fun Saturday night stuff!

Got the bed made up, unloaded a few groceries.  He settled in downstairs.  I was upstairs.  He got ready for bed.  I fell asleep on the couch.  More fun Saturday night stuff...

Waking up, I realized it was one of those days that slipped by.  Work, shopping, making the bed.  We hardly talked.

I hollered down stairs, was he ok?  What did he need?  Nothing.  I told him I missed him.  He said, come on downstairs.

I climbed in to that little twin bed that sounded like it had a life of it's own.  There was room for us both.  We snuggled for a while.  His back, so bony.  You touch his arms and they feel like baggies loosely filled with water.  It made me sad for a moment:  the fact we aren't together as much as I'd like, that I let a day slip by without making it special, that he was in this twin bed that sounds like he's in a hospital already.

I can't think of anything more to say here.  

More reality checks

Luther's hospital bed is being set up as I type this.

He is now officially relegated to the basement.

:(