How to Advocate Like a Boss - Part 2

To get caught up, be sure to check out Part 1 of this series.

Now that Jeff had finally been admitted, we had one hurdle crossed. But we still had the daunting task of figuring out what was causing these random, frequent autonomic dysreflexia episodes - and more importantly, we had to educate doctors and other staff on the urgency of our situation.

After getting settled into our room, we met with the hospitalist - we’ll call him Dr. Y. He was Jeff’s main doctor during the hospital stay, and everything flowed through him. If Jeff needed medication, Dr. Y had to approve it. If we wanted to see a specialist, Dr. Y would be the one to okay it. Dr. Y was our lifeline to getting things done.

And he had absolutely no clue what autonomic dysreflexia was.

So we explained. I handed him the printout I’d brought. He looked at it, but not long enough to take it in (unless he was a speed reader). He poked around Jeff’s stomach and asked where it hurt (ugh - THAT question again). He didn’t seem to think there was much urgency to Jeff’s current condition - or at least he didn’t give us that impression. He hinted that the antibiotics Jeff had been started on in the ER for a urinary tract infection should clear up this whole blood pressure issue. He said he would see us again tomorrow, and he left.

The next day we were met with a slew of specialists - a neurologist, an infectious disease specialist, and a general surgeon. We explained AD to every one of them. At this point, we pretty much had our elevator speech memorized - we had to recite it so often.

The neurologist ordered a brain scan. The infectious disease doctor ordered blood work. And the surgeon ordered a more in-depth scan of Jeff’s gallbladder to test if it was functioning normally. This last test is the one we were most interested in since Jeff and I were pretty sure the gallbladder was what was causing all this.

The brain scan and the bloodwork came back normal. But the gallbladder scan did not.

When the surgeon came in to tell us the results of the scan, she said Jeff’s gallbladder was not functioning optimally.

So you can imagine our surprise at what she said next:

“But there’s not an indication that the gallbladder needs to be removed. There’s no sign of infection. And while it’s not functioning optimally, it’s still within the limits of normal function.”

WHAT?

“We’re going to continue treating you with antibiotics for a urinary tract infection, as that’s what seems to be the cause of the issues you’re having.”

Clearly she’d just had a big swig of the Cool-Aid Dr. Y was serving up to the specialists behind the scenes.

Jeff and I were devastated. He’d already been on antibiotics for several days at this point, and his AD episodes were not decreasing. While the medicine may have been working on the UTI, it was not working on what was causing the AD. We felt like the only two people in the entire hospital that could see this.

Later that evening, about 30 minutes after we had dinner, Jeff had a whopping AD episode. His entire torso and neck erupted in red blotchy patches and his blood pressure sky rocketed to 170/120.

I raised the head of his bed as high as it would go. Usually this makes the BP go down within a few minutes. But this time it didn’t. I monitored his BP every 2 minutes. And after about 10 minutes had passed, it wasn’t going below 160/100. A nurse was in the room with us watching the whole thing unfold. I honestly think she had no idea what to do.

Jeff looked at me and said, “Get the paste.”

I quickly retrieved the nitro paste I kept in my bag for urgent AD situations like this one, and I applied an inch to his forehead. By the time I took his next BP reading, it had gone down to 150/100.

It was working.

That’s when the nurse finally spoke.

"Does the doctor know you have this medicine bedside and are using it?"

I turned to her and said, "I don't know if the doctor knows, but I'm happy to talk to him about it once my husband is stable. Right now, this medicine is saving my husband's life.”

To be fair, the nurse was not rude in any way when she asked her question. She was just following hospital procedure. But again, she clearly wasn’t understanding that an AD episode like this required quick and efficient action.

“We don’t mean to be disrespectful,” I explained. “But the truth is that in the time it would take you to obtain this medicine and apply it, my husband could have a seizure or a stroke. This is what we’ve been dealing with at home for the past two weeks. And this is why we’re here. My husband's body can't endure much more of this. We need help in figuring out what's causing it.”

During our talk, Jeff’s BP trickled back down to a normal level.

I wiped the paste off his head and got him situated in the bed. The nurse just stared at him as if the doors of Wonderland had been opened before her. She shook her head slowly and said. “I’ve never seen anything like that.”

******

Dr. Y bounded into our room that night at 10 pm. If he had learned about our earlier “illegal” use of the nitro paste, he made no indication. Instead he asked if Jeff was feeling better and commented that his blood pressure “looked good.” And it was - right at that moment. But we made sure to tell him about the multiple AD episodes Jeff had had that day when his blood pressure wasn’t so good.

He then started talking about sending Jeff home on antibiotics.

And that’s when we revved the engine of the advocacy bulldozer we came in on.

We politely but firmly refused to be sent home. We were not at all confident that the source of the AD had been identified and properly treated.

We asked to speak with the surgeon again. Or a different surgeon. It didn’t matter. But we needed to address the gallbladder issue again.

And we also wanted to speak with a urologist. Knowing that Jeff had bladder stones, we wanted to talk to a doctor about those being a potential cause of the AD.

We were at the end of day 4 and felt like we still hadn’t made much progress.

It was obvious that wasn't the direction Dr. Y wanted to take this, but he agreed and left.

******

In the late morning of day 5, a new surgeon entered Jeff’s room for a follow-up consultation. We started by explaining what was going on. We discussed AD. I gave him the handout and we waited in silence while he read it. He hadn’t encountered AD before, but after reading the handout he said it made sense to him.

Then Jeff asked him this: “If I wasn’t injured and could feel what was going on with my body, based on the results of the gallbladder scan, do you think my gallbladder would be causing me pain?”

The surgeon looked at him and said simply, “Yes. You would very likely be having intermittent pain.”

Jeff and I said - at the same time - “Then that’s what’s causing the AD.”

Jeff reasoned with the surgeon further. “I didn’t come in here looking to have surgery. But my wife and I strongly feel that the gallbladder is the cause of my problems and needs to come out. We deal with the side effects of my injury every day, and we know my body’s reactions very well. We know there’s something going on inside. Surgery is the last thing I want, but in this case, we think it’s warranted.”

The surgeon listened, nodded his head, and calmly said, “Yeah. I agree.”

After a little more discussion, and a confirmation that the surgery would take place the next day, the surgeon left the room and Jeff and I melted into a puddle of happy tears. We finally felt like we were making progress.

About 30 minutes after the consultation with the surgeon, Dr. Y walked into Jeff’s room talking on his cell phone. He was saying, “I’m going to let the patient’s wife talk to you to explain the details of her husband’s condition.”

Evidently this was our consultation with the urologist.

I took Dr. Y’s phone and was met by a calm voice on the other end who told me he was in his car on the way to another hospital to perform an emergency procedure. I had 10 minutes.

And I used every minute of the 10 I was given. I explained my husband’s condition and our concern over multiple autonomic dysreflexia episodes. I explained that we were pretty sure it was his gallbladder, but that we were also concerned that his bladder stones could be causing this as well. We had a very professional, calm discussion. The urologist was not familiar with AD, but he clearly grasped the concept. And near the end of our conversation said that “while bladder stones are not usually considered an emergency situation, if they are causing autonomic dysreflexia in a quadriplegic, then I would classify it as a reason for emergency removal.”

I finally felt like someone was not only listening to us, but was also understanding the urgent nature of what was happening in my husband’s body. Plus, I got a good vibe from this doctor when he pronounced the phrase “autonomic dysreflexia” back to me perfectly. Most doctors who aren’t familiar with it can’t do this without John Travolta-ing it.

We ended our conversation by agreeing that if Jeff was still having AD after the gallbladder removal, we would move on to the bladder stones. The doctor then complimented me on my thorough knowledge of spinal cord injury related issues, and I thanked him for his willingness to listen and his understanding. We hung up and I handed the phone back to Dr. Y.

So within the span of 30 minutes, we not only had a plan, we also had a back-up plan.

Can I get a hallelujah.

******

The next morning rolled around and Jeff was taken in for surgery. I sat by myself in an empty room, anxiously waiting for the surgeon to come tell me everything went well.

And she did about 90 minutes later. She said there were a “ton of gallstones” in his gallbladder, and was hopeful that this was indeed the cause of the AD.

And guess what…

It was.

Once the surgery was done, the AD disappeared.

After days and days and more days of AD happening over and over again, we finally had a break. My poor husband finally got some decent sleep. And this exhausted wife finally got a little bit of pressure relief on those frayed nerves of hers.

Now all we needed was home.

Still trying to figure out what's going on.

Jeff goofing around. He made me take this picture of him. I was laughing in the corner of the room the whole time.

Managing a few smiles before surgery.

I am one of the few people who walks around the hospital with an Ambu bag attached to my backpack.

How Crocheting Helped Me Rebalance My Life

I’ve always been a little bit crafty. I love creating things with my hands, and I especially love crocheting. I’ve made countless blankets and beanies (and even a bikini!) over the years. While I’ve also enjoyed things like quilting, scrapbooking, and embroidery, there’s just something about a hook and yarn that speaks directly to my soul.

But in 2013, all of my crafting came to a halt. While at the beach with my family, my husband Jeff dove into the ocean and broke his neck. He was instantly paralyzed from the neck down - and in that instant, our lives were forever changed. He became a quadriplegic and I became a caregiver. We were 39 and 37 years old with a 4-year-old daughter.

He spent 7 months in a rehabilitation hospital where together we learned the beginnings of facing life with a spinal cord injury. When he came home, I quit my job to take care of him. We left an environment where a slew of nurses split his care in shifts. Now at home, it was just me.

I was consumed with caregiving.

Though it took a while, we did eventually get into a routine. But during the first year, I didn’t even think about picking up a craft. I just couldn’t. We moved twice in five months - and again a year after that. I ended up donating a big chunk of my crafting supplies at this point. The rest - my sewing machine, a few scraps of fabric, and my beloved crochet hooks, knitting needles, and skeins of yarn - were hastily packed into cardboard boxes and stored in a garage. My world now revolved around things like ventilators, catheters, and transfers, and my hobbies were relegated to a distant back burner.

Yet creativity still called to me. I remember trying to hand embroider a decorative E on fabric for our daughter Evie, but the time-consuming nature of finding the right colors and ironing the fabric to perfection, and transferring the pattern to the fabric were simply too much. Tasks I used to find rewarding and relaxing were now frustrating and stressful since they were competing with my demanding schedule as a caregiver.

About two years into my husband’s injury, I found myself at a local craft store with our daughter choosing some summer projects for her. I used to spend what felt like half my waking hours in stores like this in my old life. Now being back in one after such a long absence was overwhelming. We spent time in the kid craft aisles and filled our basket with projects that were intended to last the whole summer, but in reality would last just a week or two. And just before we checked out, I felt that pull. That same one I always felt in these stores.

“Let’s go look at the yarn,” I whispered to Evie. She nodded and followed. I hadn’t even been in this particular store before, yet I instinctively knew where the yarn would be. And when I turned down the aisle and was engulfed by the colorful fibers on either side, I felt something spark inside me that I hadn’t felt in a long time.

I picked up two skeins of glittery yarn with the intention of making myself a scarf. Nothing fancy. No intricate pattern needed - just a simple stitch I knew by heart. I left the store with that excited feeling every crafter knows when a new project is on the horizon.

And do you know how long it took me to finish that project?

TWO YEARS.

Yes, you read that right. Two years for a simple scarf that would have taken me a few days to complete in my old life.

But I don’t have my old life anymore - I have my new one now. And I’ve learned to look at the role crafting plays in my new life in a new way.

I’ve learned that small projects that I can pick up and put down at a moment’s notice are the way to go. Long gone are the days of making intricate quilts with custom embroidery. I no longer have the space nor the chunk of time to dedicate to those projects. What I have now are snippets. Do I miss those long, free hours of crafting at will? Of course. But instead of being resentful for what I no longer have, I’ve learned to be grateful for the time slots available to me now. I’ve learned to work within the snippets.

And crocheting small, meaningful projects within those snippets has given me a sense of joy. They help restore the balance in my life when it’s overrun by the constant call of caregiving. They help bring a little bit of “me time” to my life. Not every day, of course. Sometimes not even every week. But when I need them, they’re there. And I’ve been working on incorporating them into my life a little more. They’re the balancing force I need.

And as for my once depleted yarn stash, I’m happy to say I now have a bin dedicated to yarn in my office closet. And guess what … I think I’m going to need another bin soon.

Now that’s a good feeling.

Working on the Two-Year Scarf in the car.

Me finally wearing the Two-Year Scarf - and Jeff donning his go-to beanie I made for him over a decade ago.

Me and Jeff sporting the Star Wars beanies I made for Halloween.

My latest project - a summer vest!

My current WIP - mermaid gloves for Evie.

*** If you are a caregiver in any capacity or have experienced a monumental shift in your life, I encourage you to pick up an old hobby - or discover a new one - to help find the balance you need. If you think you don’t have time, try it even for a few minutes. Sometimes that’s all it takes. Don’t be afraid to work within the snippets.  

xoxo