Wednesday, April 25, 2018

On Being Resilient

Yesterday Jeff started running a fever. His spasms were out of control, and he was having random episodes of autonomic dysreflexia.

All sure signs of a UTI.

We called his nurse and told her the symptoms and what we thought it was. She agreed, and we had antibiotics within 2 hours.

Still, Jeff and I are always trying to think a couple steps ahead of his symptoms, and we try to be as proactive as we can. So when he looked at me and said, "You might want to pack," I knew exactly what he meant.

If Jeff's symptoms don't start showing improvement in 24 hours, we'll have to head to the hospital. And any hospital trip requires preparation. I have to take a ton of supplies. I know that sounds weird - taking medical supplies to a hospital. But believe me, it just works out better when I can whip out one of our home supplies rather than asking a nurse or CNA to track something down. I also have to pack for myself because I try not to leave Jeff's side anytime he's at the hospital. So that means clothes, personal necessities, cash on hand, etc.

There's also the ventilator battery, Jeff's medications, the list of Jeff's medications, the printout of the ventilator settings, a copy of our power of attorney, a printout explaining AD ...

The list of what we need to take is long.

So I spent a couple hours yesterday, off and on, gathering up necessities for a "just in case" scenario.

And when Evie got home from school, I told her that Daddy wasn't feeling good and we might have to go to the hospital. She immediately went into his room and I heard her ask quietly, "Hi Daddy. How are you feeling?" Then she went into her bedroom and started packing a few items of her own, in case she has to stay with Nana and Papa for a few days.

We've all been through this before.

* * * * *

Jeff was starting to feel a bit better by the evening, but we were still on high alert. Things can change so quickly with his health when his body is off. And when his health is hanging in the balance, the atmosphere in our home changes. Things become very serious. Even though we try to keep it light, there's a heaviness that we all feel.

So just before Evie got into the bath, I wasn't too surprised when she turned to me with tears in her eyes. I pulled her close and let her tears fall. "I don't want Daddy to have to go to the hospital," she sobbed. "I'm scared."

In the past, she'd always had more anxiety about being away from us, but now that she's older, this was the first time she expressed concern for Jeff first and foremost.

She got into the bath with red eyes, and began washing away her sadness. By the time she was finished, she emerged with a smile.

I was sitting on my bed, which is next to Jeff's bed, and I thought Evie was going to come over and sit and cuddle with me. Instead, she walked over to Jeff's side and said to him in a gentle voice, "Daddy, can I take your blood pressure?"

"Sure," Jeff said back to her.

So she pushed the button and watched the numbers on the machine count up. When it hissed, she read out the numbers, "110 ... over ... 75." She looked at me for confirmation that she'd read it out correctly. I nodded and smiled at her.

"Is that good?" she asked.

"Yep, that's perfect for me," said Jeff reassuringly.

* * * * *
Later that evening, just before bed, she took his blood pressure again. And this time she held his hand while she did it. Earlier in the day I was doing the same thing. I knew Jeff had no idea she was doing it. He can't feel it, and he couldn't see it because it was out of his vision line. Jeff's fingers no longer bend - they are stiff from years of lying flat. But his skin is soft and warm to the touch.

Evie's fingers looked so little wrapped around his thick hand.

I walked to the other side of Jeff's bed, and the three of us smiled quietly at one another - our smiles were a mix of concern and love. Evie leaned over and gave Jeff a hug. She put one arm on his stomach, and put her other hand on his shoulder. I leaned in for a hug as well. With my arm on Evie's arm, I buried my face in Jeff's neck.

And we held tight to one another for a nice, long family hug.

"This is my favorite," Jeff said softly. "My girls."

* * * * *

This morning, Jeff's fever is gone, and it looks like the medication is working. So we're keeping our fingers crossed that we can avoid a hospital visit.

After Evie went to school, I told Jeff how she had cried last night before getting in the bath. But that she didn't want him to see. And how I observed a resiliency in her when she came out of the bathroom and went right into nurse mode.

He looked at me and said, "She learned it from you."

I smiled and took in the compliment. And I guess he's right. I realized that that resiliency - that falling apart followed by calmness when it comes to dealing with difficult, scary issues - is one of the things I'd like to pass along to Evie.

Granted, she can scrape a knee and convince us all that the world is coming to an end. But when it comes to caring for her dad, she's calculated ... measured ... confident.

What a treasure this girl is to us.

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.