Friday, February 13, 2015

One Year Home

One year ago today, Jeff came home to us.

He had spent the prior six and a half months in the hospital following his accident. And nearly every day he would say, "I can't wait to be home."

Jeff was medically stable to be released about a month before he actually came home, but the insurance company needed time to coordinate things like home health, medical equipment, and a slew of behind the scenes stuff.

And so we waited.


I spoke to our case manager every day for an update. So when it was finally confirmed that Jeff would indeed be going home, we were positively giddy the day of Jeff's release. You couldn't keep the smiles off our faces. I tried to eat as much breakfast and lunch as I could at the hospital, but my body was a bundle of nerves, filled with anxiety, excitement, uncertainty, elation. So many things all jumbled together.

The hospital staff was very aware of our release day, and one by one, the nurses, therapists, and doctors came in and said their goodbyes and posed with Jeff for pictures. I gave heartfelt hugs and thanks to the once strangers who had become such a big part of our lives for the past several months. We shared laughs and tears with these people. We learned about their lives beyond the walls of the hospital, and several of them teared up as they wished us all the best in our transition home.

Finally at about 2 pm, the ambulance and EMTs arrived to transport Jeff home. It always made me nervous when Jeff would be manually transferred from the hospital bed to the tiny stretcher. Jeff's a big man, and those stretchers are pretty thin. And I had discovered over the prior months and seeing Jeff be transferred several times from a bed to a stretcher, that even though the EMTs know he's paralyzed from the neck down, inevitably once he gets onto the stretcher, one arm usually flops to the side and has to be quickly secured with a combination of a pillow, the sheet underneath him, and a strap.

The transition went smoothly enough (I may or may not have been kindly barking instructions on carefully transferring him due to his fragile neck and still healing skin on his tailbone following his flap surgery. I just couldn't help it. I know that this is their job, but this man is my life. Cut me some slack, hey?). They began to wheel him down the hall and I felt like we were the grand marshals in a parade as I waived like a princess, and Jeff did his quad nod to signal our departure.

I drove my car (packed to the brim with supplies and Jeff's personal belongings from the hospital) while Jeff was transported in the ambulance. Upon arrival at our home, Evie was flitting about in a frenzied state of excitement now that Daddy was coming home.

Here they are, all smiles.

I can remember how happy my heart felt at the prospect of Jeff being able to see Evie on a daily basis going forward. While he was in the hospital he didn't get to hear the pitter patter of her little feet, see her smiley sleepy face greet him each morning, or listen to her long, rambling stories about princesses and ponies. But now all those things were back.

And our family was back together again. Complete once more.

I look back on the last year and sometimes can't believe how much we accomplished and overcame. If you've followed the blog for some time, you've probably read about the big stuff. But here's a brief recap.

- Jeff has remained relatively healthy the whole time he's been home. He just recently had his first chest cold, and we had only one skin issue in the last 12 months.

- We've established ourselves with doctors and specialist and have taken many trips to doctors' offices. Even had a couple outpatient adventures for some surgical procedures.

- We've gotten out and about in our modified van thanks to the generosity of friends, family, and strangers.

- I went back to work after an 8-month absence while Jeff was in the hospital and transitioned home.

We've had frustrating, emotionally draining days where we've screamed and cried at this awful injury. We've had fun, happy days where paralysis takes a back seat in our lives, and we simply live.

We've experienced outright gawking, averted eyes, and palpable awkwardness when out in public. We've also been met by the genuine smiles - not the "I feel sorry for you" kinds - from a few strangers who I like to think are ahead of the curve and can see beyond a wheelchair.

We've watched (and learned from) our 5-year old daughter who accepts our new life without hesitation. We do our best to follow her lead as she blazes a trail onward. She looks back occasionally - because she remembers some specific instances and memories before Jeff's injury - but never with sadness. To her it was just a different time in our life. Her only direction is forward.

Jeff and I have developed a deep trust in one another that, honestly, I don't think existed before the accident. I don't even know if it had the potential to exist before that. It's like this catastrophic injury and resulting life change opened up a new dimension in our relationship. We're extremely in-tune with one another. More so than we've ever been.

What a strange dichotomy - how something can break your world apart and yet bring you even closer than you were before. I can't explain it, but that's exactly what's happened.

And along the way, we've discovered that this life is doable.

It's hard. It's overwhelming. And it's very often unpredictable.

But it's our life.

And we've done it - for a whole year - at home.

There's nowhere else we'd rather be.

Friday, February 6, 2015

Ups and Downs

The last few weeks have been filled with more stress than usual. Good times too, but the stress has been weaving its way into daily activities, and has loitered around longer than I'd like.

Last week, Jeff caught his first chest cold since he's been home. We almost made it a whole year at home without him being sick. But last weekend I could hear it in his voice. It was raspy and weak. And his vent tubes would rattle with each exhale - a conclusive sign of congestion.

Because of the high level of Jeff's injury, he cannot cough up any junk in his lungs. His cough is extremely weak. He can't even clear his throat with force. So when the junk starts to build up, I have to suction his lungs with a catheter hooked up to a suction machine. Kind of like vacuuming his lungs. Gross but necessary.

When his lungs are healthy, we only do suction a couple times a week. So I knew it was getting bad when I had to suction him more in one day than the last few months combined. And the stuff coming up was nasty.

I was convinced and terrified that he had pneumonia. Jeff coughed his way through Superbowl Sunday and felt crappy the following day, so Monday night I pulled out all the stops. I emailed Jeff's doctor with a description of what was going on and a request for additional medication if needed. I called our home health company and spoke to the after-hours operator who made a next-day appointment for a nurse to come evaluate Jeff. I started giving Jeff mucus relief pills to help break up the junk. I added an extra breathing treatment that night (and have continued the practice since then). And I emailed my boss letting him know I was taking the next day off. I took Jeff's temperature, monitored his blood pressure, and checked his oxygen levels. Then I stood over him and scowled. He laughed at me because while I was looking directly at him, he knew what I was really seeing in my head were his numbers and his symptoms (neither one of which I was happy about), and I was trying to figure out how I could fix this mess.

By Tuesday when the nurse came, his lungs were, of course, all clear. But Wednesday and Thursday brought more ups and downs in his symptoms. Clear for a few hours, followed by coughing, suctioning, and generally feeling lousy.

Then Thursday night brought a tense scene. When my mom and I were putting Jeff back to bed and turning him to remove the sling, he went into a fit of coughs and gasps. I swiftly turned him over, raised his head, and put the pulse ox on his finger to measure his heart rate and the oxygen level in his blood. It took a few seconds for the numbers to register, but when they did, his heart rate was sky high, and his oxygen level was alarmingly low. He was asking for suction in a weak, labored voice, and the blood was beginning to drain from his face. I knew he wasn't getting enough air. I suctioned him three times quickly. And on the third time, the junk I pulled up just about clogged the suction catheter. He had a mucus plug. And once it was out, he immediately felt better.

So did I.

This was the first time this scene happened at home. But we'd been through it a couple times in the hospital, and because of that we didn't panic. Jeff knew he was going to come out on the other side, and I knew I could get him there.

But what if this happened when I wasn't home? Anyone who stays with Jeff while I'm gone (and someone is always with him) has been walked through the suction process and what to do if Jeff's tubes ever become disconnected. Even Evie knows how to reconnect them. But doing these things in an urgent situation, under pressure, when faced with the real threat of Jeff not being able to get enough air is very different than performing them under benign, what-if conditions.

And so this becomes another source of my stress - being away from Jeff. Especially for several hours at a time. My work has been busy lately. I like being busy, but it's starting to creep into the overwhelmingly busy category, and that means more time away from Jeff. And that makes the stress level climb. Plus there's changes coming at my work. And not necessarily good ones in the way they are going to impact my stress level. This has all been weighing very heavy on me.

So go the ups and downs of this life. Just when I think I've got a handle on things, they go all wonky - and our ability to handle this avalanche of unimaginable stress is once again put to the test.

We've had a period of more downs than ups lately, but the scales are bound to shift soon - they always do.

I, for one, am looking forward to the upswing.

Evie throwing "snowballs" (crumpled paper) at Daddy. 
Some days you throw the snowballs. Some days they hit you in the face.