Losing Half My Nursing Care Team

I had finally become completely comfortable at Side by Side Assisted Living and didn’t mind calling it home. The main reason was that Jeff lived in an apartment a few houses over. Even though I wasn’t consciously aware of it at that point, I was madly in love with Jeff. Back then, I just thought he was the best friend I’d ever had, he just happened to be a guy. I would have given up my life for him. The other reason I didn’t mind Side by Side anymore was because I was in the independent living section. They never would have been able to provide me with adequate nursing care in the main building.

I was too sick, too complex, and required too many medical interventions. Instead, they offered me a special option where I was allotted a certain amount of nursing and PCA care hours a week. I was then allowed to interview, hire, fire, and schedule my own nurses and PCAs to provide my nursing care.

My Current Nursing Care Team

My current nursing care team was only made up of two people. Laurie, my PCA, and Jackie, my nurse. However, about a week earlier, my nurse Jackie had dumped a bucket of bad news over my head. She was going back to school to become a nurse practitioner.

After posting a whole lot of Facebook ads and interviewing three to four nurses, I made contact with Melody.

Describing the Type of Nursing Care I Need to Melody

As I tried to describe the nursing care I required in medical terms, Jeff butted in. He gave her the rundown on what I was like and how my care worked. Jeff described me as some sort of high-tech, Barbie doll toy. He explained that I needed to be hooked up to charge overnight.

“She also has to be constantly inflated with 2 Liters of oxygen too,” he added in.

Melody grinned at me, “I’m up for a challenge! I’d like to do more than just provide nursing care and keep you alive. I’d like to see you thrive.  If you decide to hire me, we can do lots of awesome stuff together. We can drive down to see your parents and grandparents. Other times we can go to the park with Jeff to race remote control cars. Or we can go to the mall to shop at The Children’s Place or Justice. Sometimes we can even do art projects together. I would really love it if you could share some of your writing with me!

My smile was breaking open my face. It got wider and wider the more Meldoy described activities she planned to do with Jeff and me. Even though we had only done a quick interview, she had already picked up on everything important to us. Everything we loved to do.

There’s Always a Catch

There’s only one thing though,” she said. 

Suddenly I felt my body tense up, I knew this had sounded too good to be true.  There was a catch.  Nothing this good ever happened to me.

“What is it?” I asked. My throat felt a little like a large pill was lodged in the back of it. I was almost too afraid to hear what she was going to say.

“I have two nephews that I adopted as my own sons. They both have special needs as far as being emotionally and behaviorally challenged.  I may need to bring them with me sometimes, would that be okay with you?”

The pill in my throat dissolved, and I could speak. This was a lot easier than I thought it was going to be.  How could they be that bad?  They couldn’t be much worse than Sammy.

“How old are they?” I asked guardedly.

“Max is eight and Jared is eleven,” she told me.

I felt a little better knowing that they were older. That meant they were less likely to waltz in and destroy my room, toy by toy.

“Yeah, that will be fine,” I told her.

Hiring Melody To Provide Nursing Care

Michelle grinned at me again. I knew I had made the right choice. She just had a way of making me feel really comfortable. Because her resume was amazing, I knew that she would provide good nursing care. Beyond that, she seemed to understand me, and I couldn’t wait to do all this fun stuff with her.

I looked over at Jeff, he gave me a smile of approval. Right there on the spot, I told her that she had the job.

No One is Replaceable

Jackie’s last day was difficult for me.  She leaned down over my wheelchair and gave me a big warm hug.  Her curly brown hair smelled like Pantene as it fell into my face and tickled my nose. I didn’t even care, i was making a memory. Nan had been my first nurse since leaving the nursing home. I had loved her dearly, but Jackie had provided my nursing care piece the longest. Jackie had been my nurse for the last year and a few months.

“We’re still going to talk on the phone a lot. Jay and I will come over to check on you. We’ll make sure you are still getting proper nursing care,” she promised me. Then she gently pressed her key into my hand.

I watched her drive off in her little pink car for the last time. The car Jeff always called her, “Girly-Girl-car-that-no-self-respecting-man-would-ever-ride-in.”

When Jeff saw me tear up, he pulled me in for a hug.

“At least you have Melody now,” he told me.

I nodded, but that wasn’t the point. You can’t just replace a person. The phrase “everyone is replaceable” is so wrong.

Melody Provided More Than Just Nursing Care

Melody did start that night. Even though we hit it off immediately, the pain of losing Jackie pulled at my heart. Melody’s kindness was more of a distractor.

When Melody first arrived she handed me a Hello Kitty soap dispenser for the bathroom. It made me smile. she also brought a lot of crazy stories from her old job. Previously she had worked at a residential treatment center for troubled kids. At that job, she provided direct nursing care and passed meds.

Melody caught on fast to all the routines. Soon she was setting up IV pumps and spiking mulitple IV bags. She also had to fill my feeding tube bags, administer J tube meds, prep and push IV meds, do dressing changes, and monitor my vital signs. Soon we were in rhythm with each other.

Jared and Max’s First Visit During Melody’s Nursing Care

But the first time Jared and Max were going to have to come over I was pretty nervous.

Over time Melody had told me about all the psych meds they were on. She had also filled me on in Jared and Max’s trips in and out of children’s psych units. They would get aggressive and have violent outbursts.

“So are these kids going to, like, attack us? Or are they just going to behead more rubber duckies? Maybe they might just explode your stress ball collection, right?” Jeff asked me.

I had just hung up the phone with Melody. She had warned me that she would have to bring the two of them over on her next shift.

“I have no idea,” I told him, half-laughing at the absurdity of it all, half-terrified.

The Little Terrors at Our Apartment

Melody came over with Jared and Max while Jeff and I were engaged in a very serious conversation. We were trying to decide what the ultimate superpower was. If you could only have one superpower, what would you choose?

The two little boys that came in with Melody with her looked totally normal.  I never would have guessed that they were the little terrors that Melody had described. Melody said that they hit other kids, and attacked people with knives. She described them throwing temper tantrums that went on for hours and hours with no let-up.

“Hey guys,” I said.

“Hi Becca, hey Jeff,” they said.

Explaining My Need for Nursing Care to Max and Jared

Max and Jared had a lot of questions for me about why I was in a wheelchair.

I explained that my brain didn’t send the right messages to my legs to work.

They wanted to know why I had my tubes and what they did, and why I couldn’t eat.

“My stomach is kind of like broken, it just doesn’t work right.”

I pointed to my central line. “These tubes in my chest end in my heart and give me medicine and drinks.

Then I pointed to my J-tube. “This tube in my tummy goes into a part of my belly called my small intestine to give me my food since my stomach is broken.

Rummaging around the front of my wheelchair, I freed my G tube drainage bag and showed it to the boys.

“I can’t eat or drink anything by mouth since my stomach’s broken. But I can drink sugar-free see-through drinks. That’s because as soon as I start drinking them, this tube sucks them right out of me. Then it empties them into this bag. That way I don’t get sick from drinking with a broken stomach.

The Magic of a G Tube Drainage Bag and a Nintendo Switch

I did a demo with some blue sugar-free Gatorade. Max and Jared were mesmerized. Then Melody led them to the beanbag chairs in my living room once they finished asking questions. Melody’s thirteen-year-old biological daughter sat in there with them and Melody handed them each a Nintendo Switch.

While they were busy playing Melody began doing her nursing care for me.