Five Years (and a new bed)

Today is the 5th anniversary of Jeff's injury.

Every year I write a blog post on this day - to help mark where we are along this journey. At this point I feel like we're settling in for the long haul. We aren't newbies anymore. We have experienced a lot of "firsts" that have helped build up our resilience. But we aren't seasoned veterans either. This life still has a newness to it - sometimes even a foreign-ness - that quite often makes us feel like we're living on another planet.

But the last year itself has been pretty uneventful as far as living with a spinal cord injury goes.

So a few nights ago, I was lying in bed wondering what I would write about for my yearly anniversary post.

I discovered my subject matter just yesterday.

Every morning after breakfast, I pull Jeff up in his bed. He slips down a bit during the night, so I have this method I use to get him back into position, and it involves using gravity to our advantage. His bed is motorized, so I lay the head of his bed all the way down, and lift the legs up. So he's basically inverted. Then I go behind his bed, grab the end of the sheet that's under him, and pull him - sheet and all - all the way to the top of the bed. Then I lower his feet and raise the head of the bed so he's back to a "sitting up in bed" position.

We do this at least a couple times a day. And it works great.

Only this time, the bed had other plans.

After I pulled him up, I pushed the button that raises the head of his bed.

POP!

It sounded like a firecracker went off in our bedroom. We both flinched and looked at each other.

"What was that?/What the hell?" Our questions overlapped.

Since I couldn't just leave him lying there inverted, I continued to push the button to get his head up.

But nothing was happening.

I could hear the motor whirring, but it sounded different. And it wasn't pushing the head of the bed up. It was just spinning.

"Oh my god - your bed just broke!"

I have to admit, there was panic in my voice.

Luckily the motor that controlled his feet still worked. So I lowered those. At least he was lying flat now.

In my panic I kept pushing the head button over and over, hoping it would start to raise.

Nothing.

"Try pulling on the rails," Jeff suggested.

It worked. At least a little bit. So now his head was slightly elevated. My panic began to subside a bit. I tried pushing the button and pulling on the rails at the same time, and that helped get his head to about a 30 degree angle. But it wouldn't go any higher.

I then inspected where the pop came from. There was a large chunk of plastic lying on the floor beneath the bed, and I could see it was part of the motor housing. Maybe it got hung up on something as I was lifting the head of the bed. I guess the cause didn't matter now. What mattered is that the bed was clearly broken.

An operational head of the bed is an essential function on Jeff's hospital bed. We rely on it to help regulate his blood pressure. When it spikes due to AD, we have to raise up the head as high as it will go to help his blood pressure go down. And when he starts getting dizzy when his blood pressure dumps, we have to lay it down so his blood pressure won't plummet too far.

Now that Jeff was in a relatively comfortable position (lying at a slight angle pretty much staring at the ceiling), I began the unenviable task of obtaining a new bed - STAT.

I called the vendor that supplies all of Jeff's medical equipment. "James" informed me that the bed was out of warranty, which I found out a moment later meant we would need a new prescription for a new bed.

So I got Jeff's nurse practitioner involved. I called her directly. She works so closely with us that she knew immediately when she heard my voice that something wasn't right. I explained everything to her, and she was on it. A couple hours later a new prescription was faxed over to the vendor.

I called to follow up on the receipt of the fax, and once again got "James" on the line. This time he informed me that the order came over as standard, so that meant the bed would probably be shipped out to us on Monday.

It was Thursday.

The Kristen of 5 years ago would have reluctantly accepted this as the only possibility.

Luckily the Kristen of today has learned a thing or two in the last 5 years.

"No," I said. "That's unacceptable. My husband needs a functioning bed, and he needs it today. What do I need to do to make that happen?"

More texts, more phone calls, more faxes, and a lot of waiting later, I finally got a phone call from the vendor asking for a copay for the new bed. This was a good sign. It meant they were processing the order.

A couple hours later and one last follow up from me, and it was confirmed that a new bed would be delivered between 4 and 8 pm that day.

Still waiting on the new bed. One tired and anxiety-ridden couple here.

Now that the admin part of this fiasco was complete, the physical part started. I got Jeff dressed and out of bed and settled into his chair. Then I started breaking down the existing bed. I disconnected his mattress overlay and took apart all the wiring for other equipment I'd meticulously secured. When you have an electric bed, a ventilator with a humidifier, a breathing treatment compressor, and a rotating mattress overlay, there's lots and lots of cords to wrangle.

I disassembled everything and moved the old bed out of the way. I cleaned the floor beneath the old bed and since there's no time like the present, put down the new rug (with the help of my father in law) we'd been storing in the garage for the last month.

A couple hours later, the new bed was delivered. Our bedroom was in shambles for about 90 minutes while the new bed was assembled and the old bed was taken apart and removed. Finally, the room was cleared, and the new bed was in place.

The new bed is going in!

Success! - Oh wait, now I had to put everything back together.

First, Evie and her best friend hopped on the bed to do some intense quality control, making sure the motor was fully functional.

It was!

Our quality control experts

Then it was time to put the mattress overlay in place and re-wrangle all the cords, just in reverse. After some dusting and a final vacuuming, the bed was finally ready. And at 8 pm, I transferred Jeff into his new, fully operational bed.

Putting the mattress overlay back on

Final inspection

Back in bed

Talk about breathing a sigh of relief.

***

So here we are, 5 years into this SCI life, and I'm realizing that time doesn't necessarily make things easier. This broken bed scenario and the subsequent entire day spent remedying it is just one example of how quickly things can derail in this life. One thing breaks and the rest of your day is shot.

I suppose it's similar to what happened on July 27, 2013 at the beach. One minute things are going great. Then something broke. And everything derailed.

Only back then, when we finally got out life back on track, we found we were on a completely different set of rails with miles of unfamiliar territory to explore ahead of us.

At least this time, these rails are familiar.

And today we're working on getting our bearings back in line so we can continue onward.

***
If you'd like to read the other anniversary posts I've written, here are the links:

Year 1 (2014)

Year 2 (2015)

Year 3 (2016)

Year 4 (2017)

The Generator

Last night around 10 pm, we had a major thunder storm roll through our neck of the woods. Lots of thunder, lightning, and heavy rains.

Evie and I watched the skies from our back door. We oohed and aahed at the light show. Then quickly scampered back into the house when the thunder clapped.

Our satellite lost signal due to the storm, so instead we put on old episodes of Star Trek on Netflix. All three of us were comfy and snuggled into bed while the storm raged outside.

Then I got an alert on my phone: "Severe thunderstorms for Clark County." Clearly we didn't need an alert to know this was happening. But it wasn't the alert itself that caught my eye. When I clicked on the link provided, I was taken to a web page that showed something far more ominous than a thunderstorm ... power outages.

Already, 19,000 people had lost power in our surrounding area due to the storm.

I read the news to Jeff.

He looked at me with the serious face we both so often wear these days.

"You need to try to start the generator - just in case."

Because for us, a power outage is more than an inconvenience. My husband lives on life support. And he sleeps on a special rotating air mattress that helps prevent pressure sores on his skin. The battery for his wheelchair ventilator was fully charged, so in the case of an outage, we already had several hours of battery power available to keep him breathing. But we don't have a secondary power source for his bed. So we would need the generator for that.

Luckily, we were still at Yellow Alert at this point. We still had power. But Jeff was right - I needed to make sure the generator would fire up now. Because the alert status could hit Red at any moment.

Here's the thing: I had never started the generator before.

My father-in-law powers it up every once in a while to make sure it's working properly. He even wrote out simple, easy-to-follow instructions for me.

Until tonight, I'd never really looked at them.

Jeff told me to pull the generator away from the wall and make sure I had enough space to yank the cord. He said I didn't need to put the garage door up because if it fired up, I wasn't going to keep it on for long. I listened intently to his instructions. He's so good at talking me through things.

I put my headlamp on, got the instructions, and went to the garage.

I lugged the heavy generator into the middle of the open space in the garage and inspected all the elements. I found the gas lever, the choke, the power switch, and the pull handle.

The first three instructions were easy:

Gas on, check.

Choke on, check.

Engine switch on, check.

Then came the fourth instruction: "Pull starter rope until engine starts."

I knew this one was going to be the big hurdle.

I'm a small woman. With some pretty un-muscular arms. And tiny wrists. And dainty hands.

I didn't have much confidence that this would actually work.

I grabbed the handle and pulled.

The engine made a whirring sound, then stopped.

I pulled again. Same thing.

I pulled yet again. Still same thing.

I felt a twinge in my right shoulder. Like it was saying, "You're killing me, Sachs!"

I thought, maybe I need to pull slowly at first - until the rope had some tension, then pull fast. That was even worse than my first three attempts.

I took a breath and exhaled with force.

Kristen, you need to pull as hard as you can. 

Pull it like the power just went out.

I yanked the cord hard and fast.

The engine whirred again, louder. And this time it didn't sputter out. It thundered to life, then settled into a low rumble.

I slowly turned off the choke, following the final instruction, then I let out a little cry and laugh combined. I could NOT believe it started.

For a few seconds, I just stood there taking it all in. The sound of the engine roared in my ears, the smell of the exhaust invaded my nose. It was loud and smelly, but I didn't care. Because that sound and that smell meant one thing to me: Life.

I let the generator run for another thirty seconds, then I shut it off.

I darted back in the house and shouted, "Did you hear it?"

"No!" Jeff said as I got to the bedroom. "Did it work?"

"I GOT IT STARTED!" My enthusiasm couldn't be hidden.

The surprise on his face mirrored the look on mine. Evie jumped up and down clapping. She was wearing her headlamp too.

The three of us celebrated our little victory as the storm continued to pound down.

In the end, we didn't lose power last night. But if we had, we were ready to spring into action.

There's a lot of planning that goes into living a life with a disability, especially if that life involves life support. Being proactive is just as important as being responsibly reactive. It's a lesson we've learned - sometimes the hard way - over and over ever since Jeff's injury.

Because the storm that hit us last night was just a blip on the radar compared to the one we've weathered every day for the last five years.

Me and my little storm chaser as we prepared for a potential power outage.