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.

Monday, August 29, 2016

Understanding the Fear and Growing Through It

Our girl started second grade today. She told me last night as I was putting her to bed that she was excited and a little scared ... but mostly excited.



She was up at 6:45 this morning with wide eyes and a smile, ready to take on the world. In the last few days I swear she's grown a couple inches.

Sometimes the growth and change in our children seems to happen so suddenly. One day they are playing dressup, and the next day they're asking questions parents aren't yet ready to answer.

I recently got to witness one of these developmental leaps in Evie.

It centered around the events of Jeff's injury.

She and I were in her room talking about fear. The subject came up because she had been playing out front earlier that day, and I'd been watching her like a hawk. I tried to explain why I keep such a close eye on her - that I'm not necessarily watching her. But rather, I'm watching out for her.

I fully believe that because of Jeff's injury, I now have a deep-seeded, almost constant fear that something else bad will happen. My fear then manifests itself into the completely irrational thinking that if I keep my eye on Evie, nothing bad will happen to her. If I can see her, she'll be fine. And I think my mind follows this completely irrational path because I didn't actually see Jeff's accident happen. It's one of those, "Maybe if I'd been watching him he wouldn't have been hurt" nonesense things my brain sometimes does.

And so the conversation I was having with Evie turned to the day of Jeff's injury.

Evie was at the beach when Jeff was hurt. She had turned four just a couple months before, and as she stood in the sand that day, she couldn't possibly understand that she was witnessing an abrupt change in the course of her family's life.

She's asked me so many questions about that day. Things her four-year-old-mind doesn't remember: "What bathing suit was I wearing the day Daddy got hurt?" "What was I doing right when Daddy hit his head?" "How did I get home from the hospital that day?"

But the questions she asked me now were different. They were deeper and showed a surprising level of empathy that, frankly, I didn't expect yet.

"Did you cry when you first ran up to Daddy when he was laying in the sand?" I didn't cry right away, I told her. I was really scared and was trying to figure out what had happened to Daddy. And sometimes when you're scared and confused, you don't cry right away.

"What was Daddy feeling when he was laying there?" Then she clarified - showing that she was talking about his emotional state rather than physical sensation because she knows that was something that was already gone for him. "I think he was probably really freaked out!" she continued. And on the words "freaked out" she opened her hands and thrust them downward with each syllable to emphasize the emotion. Yes, Daddy was really freaked out. He was very, very scared.

"When they took Daddy in the ambulance, did you ride next to him?" No, I wasn't allowed to ride next to him because the paramedics had to work on him during the ambulance ride. I rode up front with the driver."

"When you got to the hospital, did you stay with Daddy?" The nurses and doctors took Daddy into the hospital to do X-rays on him to find out what happened to his neck. I had to go with a woman to the waiting room and give her all of Daddy's information. After that, I got to go back into the room with Daddy.

"Was he sleeping when you got there?" No, the doctors and nurses were just getting ready to sedate him.

"Was he still really freaked out?"

With that one question, the images of being in that room with Jeff came flooding back to me. It was a tiny room. Hospital staff whizzed around Jeff hooking him up to every machine they could cram into that tiny space. I floated in a trance to Jeff's side. His brown eyes wide with sheer panic met mine, but I could tell that he couldn't really see me. His voice was weak and hoarse, and his shouted words came out as a whisper - "I can't breathe!" - and they left a breath mark on the oxygen mask over his mouth.

The doctors made me leave Jeff's side, but they didn't make me leave the room. I stood down by Jeff's motionless feet as they prepared to intubate him. I looked away as they put the breathing tube in his mouth and down into his lungs. I could see numbers and flashing lights on all of the monitors, but I didn't know what any of them meant. Then slowly, as each staff member finished their job, they ensured their patient was stable, and they began leaving the room, one by one. Until it was just me and Jeff, and the beep, beep, beeping of the monitors.

I was numb and gripped with fear.

I shook the memory away and came back to the present. I quickly decided all those details were probably a little too much for this particular conversation, so I simply answered, Yes sweetie, he was still really freaked out.

She nodded, satisfied with what she'd learned from our conversation.

And I realized that I was witnessing a growing moment. Her questions about that day were no longer centered around her. Today she was interested in learning about the experiences of others. She showed me that she understands that it was a really scary day for all of us - for her, for me, especially for Jeff. And she showed me that she isn't afraid to talk about it.

This morning, the first day of second grade, just before Evie and I headed out the door to walk to the bus stop, Jeff needed suctioning. We always need to make sure there's no obstructions in his lungs before I leave the house, even for just a few minutes. Jeff not being able to breathe is one of our biggest fears. I stood to the left of his bed and made quick work of clearing his lungs. Evie stood to the right of his bed, and as I finished up the suction work, she expertly grabbed the vent tubing, attached it back to his trach, and secured it on both sides with rubber bands, her fingers moving deftly and confidently.

She looked at us and smiled her yeah, I just did that smile. This is one fear she's definitely conquered.

Still, this life is filled with all kinds of fear. And everyday we interact with it.

We face it.
We re-experience it.
We overcome it.
We learn to live with it.

But mostly, we grow through it.

2013

2016 

 Look how far we've come.