Tuesday, October 18, 2016

I'm Not in a Bad Mood - I Just Have My Game Face On

"I want you to be happier, Mama."

The soft voice of my seven-year-old daughter snapped me out of my thoughts and brought me back to the present.

"Oh, I'm not unhappy, Sweetie," I told her reassuringly. I smiled at her to make sure she knew I was telling her the truth.

"I thought you were upset," she continued. "You had your mad face on just now."

Moments before, I was in the bathroom getting ready to head out of the house with my family. We were planning to visit my dad's new place about 7 miles from our home, and it was about 30 minutes before our departure time.

I was standing in front of the bathroom mirror when Evie came in. I was in a deep state of concentration. In my mind, I was going over the checklist of supplies I'd packed for our outing:

Suction machine is charged and packed. Check.

External power supply is packed under the back seat in case Jeff's vent battery fails. Check.

"Go Bag" full of one of each supply we'd need in case of emergency is in the back of the van. Check.

Did I pack the nitro paste in case of AD? Yes, front pocket of Go Bag. Check.

Don't forget the portable ramp. It'll be the last thing you put in the van - just behind Jeff's chair.

I was visualizing all of the supplies on my checklist, so when Evie came in, I didn't even know she was there at first. And so it turns out that what she thought was my mad face was actually my game face.

Because so much of this life is about preparing. Any time we leave the house, no matter how long we plan to be gone, we are consumed with preparations. Long gone are the days of grabbing keys and wallet and hopping in the car. Now it's about creating a What If list then making sure we're covered should that What If come to pass. I'm fully aware that living life constantly worrying about unlikely or unfortunate scenarios manifesting themselves is rather unhealthy, but when you live with a spinal cord injury, facing life unprepared is both irresponsible and dangerous.

Evie's misinterpretation of my mood based on my facial expressions got me thinking about how others may perceive me. While I try to strike a balance in being appropriately lighthearted or serious given the situation, the truth is that the seriousness more often wins out.

I often feel that others might perceive me as anti-social because I can never truly offer them my full and extended attention. As a caregiver to a husband who is paralyzed from the neck down and on a ventilator, I always have one ear open to listen out for him. Throw in being a mom to a seven year old, and I am perpetually distracted. My attention is constantly ping-ponging between them.

For example, on early evenings when the weather is beautiful, Evie likes to spend time out front scootering up and down our street - seeing if there are other kids on the street who are doing the same thing. There usually are on these nights. And their parents are out too.

Most evenings like this, Jeff typically stays inside the house because what feels like a light breeze to us feels like a frigid wind tunnel to him. So he stays warm and cozy in the house while Evie plays away in the front yard or in the street. And I position myself in the middle. Right where I can hear Jeff and see Evie. Some evenings I see parents of the kids along the street hanging out and having conversations. I wave to them, smile, and sip my wine. But rarely do I break that invisible barrier at the end of our driveway. I have, on occasion, had more than just a "Hi, how are you"conversation with some of the neighbors, but that's only when someone is inside the house with Jeff. If he's alone, I keep the conversations brief, oftentimes politely cutting the chat short and excusing myself to check on my husband.

And most of the time, he doesn't even need me. He's fine.

But it only takes one time of him not being fine and me not being there to make this already difficult life unbearable.

I remember the weeks following Jeff's injury - those awful days where everything was so scary and uncertain. Jeff was so weak. His body couldn't tolerate being off the vent for even a few seconds. His anxiety level was at an all time high.

The only source of comfort for him was me.

One night a new nurse was doing Jeff's trach care which involved taking the air off, removing, cleaning, and replacing his inner cannula, then reattaching the air. I told the nurse that she had to be quick because Jeff couldn't be off of the air for more than a few seconds.

Perhaps she didn't hear me.

When she took the air off and began to clean the inner cannula, I could tell she was working too slowly.

My face was right next to Jeff's. I tried coaching him through this in a calm voice. "You're okay," I said, trying not to let him know my heart was beating frantically as he struggled to fill his lungs with air while the ventilator blew on his chest instead of into his airway. "The air is coming right back on in a second," I continued hoping my words would make the nurse work faster.

But she wasn't fast enough. And Jeff couldn't hold on. I watched helplessly as his world started to fade away. The blood drained out of his face, his eyes rolled backward, and his head slouched to one side.

The alarms began to sound. The nurse jumped. She clearly hadn't expected him to pass out. She clicked his cannula back in place, and I jammed the air back onto his trach. I held Jeff's face in my hands and patted his cheeks. This had happened once before, so at least I was prepared even if the nurse wasn't. "Come on back, Jeff." I told him. "Come on sweetie." His body was breathing again, but his brain hadn't caught up yet.  I patted the area where his neck meets his shoulders, knowing he could still feel there too. "Jeff. Jeff. Come on Jeff. Come back." My voice was shaking, but I kept steadily demanding him to come back to me.

Finally his eyes fluttered open and his head shook. He was confused and frightened. It took him a second to remember where he was.

"Hi sweetie," I said as relief washed over me. "You're okay. You're okay." I was telling myself this as much as I was telling him.

After he processed what had just happened, his face contorted into sadness, anger, and fear all at once, and he whispered, "I thought I died just now." I hugged him and put my forehead to his. All we could do was look at one another and cry. How could this possibly be our world now?

I'll never forget this incident. He had a few others like this in the hospital, but this one stands out to me the most. It's the reason I never stray too far from his side. It's the reason I stay in the driveway instead of mingling with the neighbors. It's the reason that when I do have to leave him in the care of others to run an errand, I am filled with anxiety until I am back by his side again.

It's the reason that I'm so serious.

It's the reason I oftentimes struggle with carrying on meaningful conversations about everyday things with other people. Not because their everyday issues are inferior to mine, but because my everyday is so different from theirs.

Because every day is game day in our world. Every day requires a level of seriousness and attention and preparation that most people can't truly comprehend, my old self from my old life included.

Because I need to be there for him - and I need to bring my A game when I do.

And because he needs me there. He needs to trust that I will be there to get him through the day.

To laugh with him,

To cry with him,

To live this life with him,

To put his air back on.

Alright, this time out has been long enough. Time to get back to the game.

Thursday, September 22, 2016

An Unexpected Birthday Gift

Jeff was injured two months before his 40th birthday. He had planned to spend that birthday with his brother Gary and some friends watching the San Diego Chargers play the Tennessee Titans in Nashville. The plane tickets were purchased, and Jeff was so excited about his upcoming trip, which had become a tradition for the past few years.

A couple days after Jeff's accident, as he lay on a bed in an ICU room, half awake/half groggy from all of the sedation, he mouthed the words, "No more Nashville" to me. I shook my head slowly, tears in my eyes, and whispered back to him, "Nope." I knew how much he wanted to go on that trip. And I knew this would be just the first of many realizations of the things he would no longer be able to do because of the sudden turn our lives had taken.

For the first two months following his injury, we spent the first month in the trauma hospital he was transported to right after the accident. Then he was moved to a sub-acute facility where he spent 6 days before contracting pneumonia. He was immediately taken back to the trauma hospital where we stayed for several more weeks.

I didn't fully comprehend why at the time, but I felt in my gut that we weren't at the right hospital. The two facilities we had been in just didn't feel right. I felt like what they were doing was just keeping Jeff alive, though just barely at times. We were at the point in our journey where we needed to be in a place where we could thrive, not just survive.

I remember hearing about a rehab hospital for people who had spinal cord injuries that was about 25 miles from our home. But after applying to it, our insurance rejected Jeff's admittance. Instinctively, I pushed back. This was my first true experience in advocating for Jeff - for us. Because although I wasn't quite sure what this rehab hospital was going to do for Jeff, I knew he had to be there. I also had to convince Jeff that it was the right move. He initially didn't want to be moved to a facility further from home. But eventually both Jeff and the insurance came around. And so on Jeff's 40th birthday, we took an ambulance ride to Rancho Los Amigos where Jeff would begin his spinal cord injury rehab.

We spent the first three weeks at Rancho in the ICU, and honestly, that time didn't feel much different than our time at the other facilities. Much of the time in ICU, respiratory therapists were trying to wean Jeff off the vent. Because his injury is at the C4 level where the nerves that control the diaphragm are, we were told that weaning might not be possible. But they had to try.

It didn't work.

In addition to the unsuccessful weaning, Jeff was now dealing with a pressure sore that had developed on his tailbone at the prior facility. And it was getting progressively worse. Jeff was losing weight fast. I felt like I could see him wasting away.

Those first three weeks at Rancho were pretty much a nightmare. I remember driving to the hospital at night and walking alone in the dark to the ICU. Nicely put, the facility was not a modern gem. Its structures were worn, and a few of the buildings looked like they'd been abandoned. Frankly, it was a bit unnerving. I remember thinking, What have I gotten us into?

But then Jeff was moved out of ICU and into a whole new world at Rancho. And we began to see just how different this facility was from the others we'd been in. We were finally entering the actual rehab stage, and Jeff was put into a room on the fourth floor of the Jacqueline Perry Institute (JPI) building where other inpatients were also rehabbing after their spinal cord injuries. A team of several individuals made up of therapists, case workers, social workers, and specialists met with us and told us Jeff had been approved for 5 weeks of rehab. We would be starting right away.

After doing nothing but focusing on surviving each day for the last two months, this was a different routine for us.

For the first time, Jeff was taken out of his bed and put into a wheelchair. A team of nurses would put a sling underneath Jeff by rolling him from side to side. There was a track installed on the ceiling over the bed that a lift would slide on, and the loops on the sling would attach to the lift. The nurses would work together and maneuver Jeff into the wheelchair parked at the side of the bed. It was tricky because they had to work around the vent. Also, Jeff's neck was still so weak, it was like a newborn's, and would flop if someone wasn't holding it. And once he was in the chair, his blood pressure would tank and he would come very close to blacking out. Some days when he would transfer into the chair, he spent the whole time leaned back to the point that he was just staring at the ceiling. Very slowly, his body began to acclimate, and he could begin to sit more upright.

He got in the chair 6 days a week. He pretty much hated it. But he had to do it.

It was one of the reasons why we were there.

Then there were classes all the patients had to attend. If they didn't feel well enough to get out of bed for class, nurses would wheel them into the room in their beds. These classes weren't optional. Family members were encouraged to attend as well, and I went to every single one of them with my notebook. We learned about so many topics:

- dealing with and preventing pressure sores

- understanding the symptoms of autonomic dysreflexia and how to alleviate this extremely serious condition for people with spinal cord injuries

- transportation options for wheelchair users

- bathing options

- discussions on pain and knowing the difference between physical and nerve pain

- sexuality after a spinal cord injury

- recreational and social activities

- financial aid options

The list goes on.

These classes weren't just a way for us to pass the time. They were filled with information we would need for the next ... well, rest of our life.

They were another reason why we were there.

Oh, and then there was the hands-on training that I began almost immediately once Jeff began his rehab. To be honest, up to this point, I hadn't given much in-depth thought as to how I was going to learn to take care of Jeff. My mind had been so focused on things like helping get Jeff through each day, making him as comfortable as I could, and handling every single jumbled up life detail that came in the wake of Jeff's injury. I had pretty much let the nursing staff handle all the hands-on stuff till now.

But that all changed at Rancho. At Rancho, I was transformed.

Respiratory therapists taught me how to suction Jeff through his trach. They taught me what the alarms on the ventilator meant and how to respond to them. They taught me how to push life-saving air into my husband's trach using an Ambu bag should the ventilator ever malfunction. They taught me that the ventilator wasn't as scary as I may have initially thought.

Nurses taught me how to flush Jeff's catheter to keep it clear of sediment. They taught me how to clean Jeff's trach using hydrogen peroxide and saline. They taught us about a bowel program and taught me how to do it so that my husband could poop on a schedule - something we hadn't even heard of before we got to Rancho. Something, as it turns out, that was a really essential piece of knowledge in moving forward in living with a spinal cord injury.

Therapists taught me how to stretch Jeff's arms and legs. They taught me how to transfer him from the bed into a wheelchair using a manual lift. They took me into the therapy gym and first transferred me from a mat into a chair so that I could get an idea what it was like from the patient's point of view. Then the therapists took turns being the patient while I did the transfers. Then I began assisting in Jeff's actual transfers, until I knew and could perform each step like clockwork.

A quirky ENT doctor taught me how to change Jeff's trach - the actual plastic piece that goes into the hole in Jeff's throat that the ventilator attaches to. He made this task, which seemed so scary to both me and Jeff, seem like a piece of cake. He didn't just teach me how to do it, he made me do it myself. It didn't matter that I had trembling hands and a pounding heart. Because he wasn't just teaching me a task. He was giving me a vital skill in keeping my husband alive. It was one of the most frightening things I did at Rancho.

None of this was easy. It was all overwhelming, exhausting, and sometimes downright terrifying.

But it was all more reasons why we were there.

As Jeff's official rehab allowance by our insurance was about to end, the wound care team at Rancho decided Jeff's pressure sore was too deep to heal on its own. He needed surgery to repair it. And so we found ourselves facing at least six more weeks at Rancho while Jeff healed. Jeff spent those six weeks flat on his back in a sand bed. No therapy, no getting up in the chair, no classes. Just healing.

While Jeff healed, he had a roommate, Jose, who was also dealing with a pressure sore. We naively figured Jose had been newly injured like Jeff, so we were surprised when Jose's wife Rosa told us that Jose had been injured for 40 years. Jose had initially been a patient at Rancho after his diving accident, and they had experienced much of what we had. Rosa told us pieces of their story. How they had four children at the time of Jose's injury. How Rosa didn't even know how to drive when her husband was injured - but had to learn quickly. How they made friends at Rancho during their initial stay, and how Rosa would drive them to their nearby house for weekend getaways. How both she and Jose acquired educations after his injury. And how Jose eventually participated in the weddings of all his children, even wheeling his daughters down the aisle and dancing with them.

Jeff and I cried when she told us this. Because finally being able to connect with people whose lives had changed so drastically like ours, and hearing how they have since thrived, is one of the biggest reasons why we were there.

Once the six weeks in bed passed and Jeff's incision started to heal, he began gaining some weight back, and was able to spend more time out of the bed and in the chair. While we waited for insurance to get all the details of discharge sorted out (which took an extra month - evidently discharging a patient on a vent is a long process), we continued to practice our newly acquired skills and work on details for moving forward in our new life. Therapists worked with Jeff on things like driving his wheelchair through an obstacle course of cones in the therapy room. He learned how to turn around in tight spaces, like an elevator. And he was measured for a custom power chair that would be delivered to our home after discharge. I continued the hands-on care, and got to the point where respiratory therapists would come in the room, hand me the breathing treatment, and let me administer the whole thing. When Jeff needed suctioning, we wouldn't even call for anyone. I just handled it.

One of the last tasks we had to complete at Rancho was spending the night in the "mock apartment" located on the second floor of the JPI. This was where, after all the skills had been both taught and demonstrated, the patient and his caregiver and family members would spend an evening alone. No nurses, no therapists, no doctors. They would be available for anything urgent, of course, but the point of the exercise was to be able to handle everything on our own as a test before we were cut loose and thrust back into "real life."

And we did it. It was like passing the final exam with an A.

So when the day came for Jeff to head home - 5 months after he was admitted - we met that day with a confidence that only a rehab facility like Rancho can provide.

And we even took a few pictures along the way:

In ICU at Rancho. This was the first time he could have something besides water to drink. :)

The first time Evie got up the courage to give Daddy a kiss after his injury.
I think the beard may have been a bit much for her. :)

Thanksgiving 2013. Healing after pressure sore surgery.

These photos were taken 3 months apart. In the one on the left, Jeff was so thin and weak. It was one of the first times he sat up in a chair. In the photo on the right, he is showing signs of getting stronger and healthier.

Practicing his driving skills in the gym at Rancho.

With the beard gone, his sense of humor is returning. :)

Evie came to visit Daddy often. Of course everyone loved her.
Being away from Evie for nearly 7 months was very difficult for Jeff.

In the days leading up to Jeff's discharge, I took a bunch of photos with the fantastic staff members at Rancho who played such big roles in helping us learn to live this new life:



Here's the quirky ENT doctor. He was a crack up.

Jeff and I still talk about how Rancho saved our life. Because it was there that we obtained both the skills and knowledge that we apply to our life every single day.

Still, every. single. day.

So as much as I would have liked for Jeff to have gone on his trip to Nashville for his 40th birthday - something he wanted so badly - what we got instead turned out to be something we desperately needed: the foundation for learning to live again.

It's something we will always, always be thankful for.


I encourage anyone who is facing a life-changing injury, illness, or diagnosis to seek out a rehab hospital specializing in your condition. It will truly make all the difference.