False Start, and Still No Answers

We were all set, like ALL SET, to leave yesterday.  At rounds they asked if I was comfortable going to the floor, or..., and I said, “home!”  I mean, he was looking great, totally where he should always be.  And had been pretty much since we got here.

Discharge papers were printed, meds were gone over.  William and the boys were on their way up to have dinner with me and take us home.  It was all great!  Was.

They were caught in traffic and I went upstairs to grab some food quickly.  Came back and things were not so great, in fact, not great at all.  He’d gone from five liters and comfortable to 12 liters and multiple episodes of bagging, and it continued.

We waited to see if he’d pull out.  Nope.  Two hours after it started it was still bag and 12 liters, then bag and 12 liters.  He was a mess.  The doctor was requested.  No one had any idea.  No one still has any idea.  More x-rays ordered, this time of his abdomen.  Nothing remarkable there.  No fevers, no discharge, normal “output” in his diapers.  Nothing.

So here we are.  I went home to grab a few things and bring the car back.  And we’re trying again.  We got him down to five liters by morning, but not until the night was almost over.  He’s not as happy as he usually is.  And we’re scratching our heads.

This is not what I had planned.  Joseph leaves tomorrow, and we’re not quite ready.  Plus there’s just those last few days of spending time with him.  And the thoughts that run through your mind.

What’s going on?  Where’s this going?  Why can’t we get him down where he should be?  Why isn’t he happy?

Honestly, these thoughts aren’t new.  Every time, EVERY TIME I leave him in the hospital I worry.  I wonder if this is the time I get a phone call I don’t want.  (That’s happened before.).   The one saying things are not good, not good in a very big way.

When I’m driving home from regular appointments I find myself really tired.  But driving to and from the hospital when he’s inpatient?  Nope, senses are pretty much on high alert, the adrenaline is definitely present, even if it’s not rushing through.  This is hard.

It’s hard for me, for Aaron, for William and the boys at home.  It’s hard on the kids that have moved out.  It’s just hard.  Sitting around gives your mind time to go places you wish it wouldn’t, you wish you didn’t even know how to think about.

November is hard anyway.  It’s darker, colder.  Eight years ago today we tried to extubate him after g-tube surgery and he failed, SPECTACULARLY, which set us up for our trach journey, which I still need to write about.

Right now, we’re aiming for tomorrow morning, or at least I am.  I was kicking myself on the way home last night for not getting a picture of Joseph with Aaron, so we “need” to be home tomorrow morning to take one before he leaves.  Please pray for our little bug that we can figure things out and get home.  Home where he belongs, where there are no IVs, no middle of the night treatments, and lots of love.  We need to be at home.

Everything is restless until it comes home. ~John Bate