Friday, March 16, 2018

Life Support

Sometimes I forget that my husband is on life support.

I mean, I never actually forget that he's on a ventilator - how could I? Afterall, much of Jeff's care revolves around the ventilator and its accessories: Daily trach care, monthly trach changes, daily charging of the vent battery, weekly tube changes, monthly supply ordering, etc.

I don't know ... I guess all of that has just somehow become part of our routine.

I think I'm talking more about the term "Life Support" and the picture that phrase creates in my mind. Even though we live with life support each and every minute of the day, my brain somehow reserves that term for someone who is lying unconscious in a hospital bed with a tube in their mouth going into their lungs breathing for them. And indeed, that's the scenario we were faced with just after Jeff's injury.

But make no mistake, my husband is still on life support - though it's strange to think of it that way since I interact with my husband on what I now consider a "normal" basis every day.

And the vent is just part of our normal.

And when it functions like it should, the whole life support thing works out fine.

It's when it fails that things take a scary turn.

Here's a brief explanation of Jeff's vent setup so the next part of my post makes sense.

When Jeff is in his wheelchair, he uses a ventilator that is mounted on the back of his chair. In order for him to be mobile, he has a battery also mounted on the back of the chair that powers the vent. And we can usually get about 10 hours of running time on a fully-charged battery.

I charge the battery each night.

So it was somewhat startling when just after dinner a few nights ago, his ventilator started alarming. We've learned not to freak out at the first sound of an alarm. Sometimes it beeps a few times when Jeff is talking too much just to let us know his breath frequency is outside the alarm parameters. Then the beeping stops. No big deal.

But the beeping didn't stop. So I checked the readout on the vent, and it said, "POWER LOW."

"Oh no. The external battery must be dead - or dying," I told Jeff.

"Ok," he said. "We'll wait a few minutes then get back to bed." Jeff's bed ventilator is plugged into the wall, so we don't have to worry about all this when he's in bed (unless of course the power goes out - you can read about the time that happened in this post!)

The POWER LOW warning usually means that the ventilator is no longer pulling its power from an external source and is now running off internal power, which usually lasts about 45 minutes.

Plenty of time. We were home, so again - no big deal.

Yet the beeping continued just one minute after I silenced the last alarm.

I checked the readout again.


And this time I could hear the motor of the vent struggling. It was whirring, lumbering along like it was nearing the finish line of a marathon. It was clear that this machine wasn't going to last 45 minutes. This time the Battery Level indicator was red as in "Red Alert" - you've only got a few minutes left.

"I have to get you back now," I told Jeff. My voice was calm but with an urgent undertone.

He sped back to the bedroom, and I quickly gathered the sling for the transfer. I was working rapidly amidst the blaring alarm and the laboring vent.

As I hoisted Jeff up into the sling, he looked at me with that look where we feel like we're the only two people in the world and said, "Nothing like your life support failing to ruin your night."

And that's when it hit me.

It's not so much the life support that's stressful in our life - it's the life support failing that's terrifying.

I got Jeff back to bed quickly and onto his other vent. And the next morning I put a call into the vendor who manages his vent, and we're now awaiting a new battery to be delivered this Sunday.

So that means for now we have a battery only capable of delivering 4 hours of juice to his chair vent until we get and charge a new one. Yes, I could always plug in his chair vent to a wall outlet, but being tethered to the wall would kind of defeat the whole purpose of being in the wheelchair, right?

I'm thankful this incident happened at home and not while we were out at a doctor's office. Or the store. Or in the car. I always, always have an external power cable with us when we go out for those "just in case" scenarios. But even then with a fully charged vent, we only have 45 minutes at most to get him to another outlet.

This is why we never venture too far from home. This is why we don't fly on an airplane. (I can barely contain my nerves when this happens on the ground; I don't think I could handle thirty thousand feet.) This is why when we DO get in the car and go somewhere I have a checklist a mile long and our van is filled with a barrage of equipment and supplies.

Can you imagine being faced with a time limit on your ability to breathe?

I can't.

But my husband can. And it's my job to make sure we beat that clock before time runs out.

Every time.

Wednesday, February 14, 2018

My Grumpy Valentine

A Valentine's Day Poem

He's highly unromantic.
He despises greeting cards of any kind.
He's like Charlie Brown - the commercialization gets to him. 
He's my Grumpy Valentine.

Every day he tells me he loves me.
He makes me laugh all the time.
He thanks me for taking good care of him.
He's my Grumpy Valentine.

He pushes through the bad days.
And on good days, he shines.
This injury has been so hard on him.
He's my Grumpy Valentine.

He's forward and pragmatic.
The drama he leaves behind.
He makes even this life worth living.
He's my Grumpy Valentine.

He's the keeper of my heart.
My true partner in crime.
He is my all, my everything.
He's my Grumpy Valentine.