My life hung in the balance as I waited for 24 hours to hear back from my mom about whether my dad was going to give the final yes or no verdict about whether or not I could be discharged to Side By Side Assisted Living and have some sort of future.
I needed my parents to pay for private duty CNA care, three hours a day for the next 2 to 4 weeks so that I could go the assisted living. Otherwise, Side by Side was completely off the table because I needed someone to be able to carry me up and down the four steps leading into my apartment in addition to helping me with all of my care. If my dad said no to this, I was going to end up in a homeless shelter. Because I am 100% dependent on IV fluids, tube feeds, oxygen overnight, use a walker for very short distances and am in a wheelchair, and need to be set up to self catheterize at least 6 times a day, a homeless shelter would be a death sentence.
After my mom dropped me back off at the nursing home following the tour, I was so stressed out that I transferred myself back into bed and did progressive muscle relaxation videos on youtube until I fell asleep with my laptop still in my lap. I didn’t wake up until my nurse came in with my night time meds.
The following morning I decided to go down to the lobby for a change of scenery to de-stress. Once I got to the lobby I transferred myself out of my wheelchair and into one of the comfy chairs.
I was still in my Disney princess pajamas, but the nurse had temporarily disconnected me from my IV fluids while waiting for my new bag of fluids to warm up, and my nighttime oxygen had been disconnected, so I transferred myself into my wheelchair, grabbed my Kindle and phone, and put the IV pole that currently just had my tube feed on it in front of me, and wheeled myself down to the lobby.
In the lobby, I tried to read a little bit to relax but just couldn’t focus on my book. I knew I was going to have to go back up to Unit 4 soon to hooked back up to my IV fluids, so finally I just bit the bullet and called my mom.
It was too soon to call my mom based on the agreement we had made with Jillian, but I was leaving Hell-Crest Commons soon, and I felt like my mom and my relationship had moved past that agreement by this point and that she wouldn’t mind. Plus, I had come so far in my relationship with my dad. I didn’t want to rip it all apart by asking him to pay for the private duty CNA and having him say no, making me feel betrayed, causing me in the heat of the moment, to say something I’d regret that would reverse all the progress we’d made.
The phone rang a few times on my mom’s end.
I started to get worried.
I started to perseverate and think that she wasn’t going to pick up because it was too soon for me to call her and that she was still following Jillian’s rules.
My armpits started to sweat…
Then she picked up!
“Hello?” she said.
“It’s Becca,” I said.
“Hi, Becca,”
“How are you?” I asked. Not wanting to just immediately jump down her throat with questions. I wanted to be polite and make small talk first.
“I’m ok,” she said. “How are you?”
“I’m hanging in,” I told her, which seemed to be my stock answer. It was the most honest way to answer the question without upsetting anyone.
“Did you have a chance to discuss the private duty CNA thing with dad, to see if I can go to Side by Side on Tuesday?” I finally went ahead and asked her.
“He agreed to do it, as long as it’s only for a month or less,” she told me.
I breathed out a sigh of relief so extreme that I think I partially deflated.
“Anna said it would be at the most a month, so we’re all set then,’ I smiled, even though I realized afterward that my mom couldn’t see my smile over the phone.
“I think Side by Side will be a really good thing for you.” My mom said,
“I agree,” I told her. “Thank God for Laura and her social worker friend Tom!”
“Thank God for them,” my mom echoed.
After I got off the phone with my mom I headed back up to my unit, Unit 4, and finished getting ready for the day.
Once I was all hooked up to the right tubes, lines, and fresh bags, and had gotten all of my crushed meds and liquids through my J tube and had taken all of my inhalers and updrafts, and gotten all vitals taken, the nurse released me to roam about the unit.
I was just about to head off the unit again when Jillian found me.
“Can we talk for a minute?” she asked me.
Panic alarms started going off in my head. Because of what my current psych team has diagnosed as complex PTSD due to a combination of my physical and sexual abuse as a child combined with all of my medical PTSD (abuse at the hand of the hospital/medical system) I get panicky quickly in certain situations. Due to the medical PTSD in specific, whenever medical professionals approach me saying they want to talk, I immediately assume they’re going to tell me I’m doing something wrong, or I’m lying about something, or they’re going to change something in my treatment that has the potential to kill me but they think is the right thing to do.
It took me a minute to fight through my panic with deep breathing, enough to respond to her.
“Sure, about what?” I asked.
“I’ve been trying to find you a visiting nursing company to change your port needle and dressing once a week as well as to do your biweekly blood draws and be in contact with your outpatient doctors and to come to see you if you need to be seen between scheduled doctors visits for any health issues that might come up in between. Nursing can also monitor your vital signs and train your PCAs on how to care for you. There are three visiting nursing agencies in Pittsfield, I was wondering if you had a preference for any of them?
I sighed and breathed out all of the panic that I’d worked up over nothing and then looked at the paper Jillian was holding with the names of the visiting nursing companies.
“Do you know if any of them are better or worse?” I asked.
“I’ve heard the best things about Amedysis or Berkshire VNA,” she told me. “Berkshire VNA is directly connected with the hospital system so some people like that a lot for continuity of care.”
“Yeah, that sounds good,” I told her. “That way everybody can be on the same page. I’ll go with Berkshire VNA.”
“Okay, I will let Tanya know, and we will work on getting that all good to go for Tuesday. I also need you to go talk to Tanya at some point this morning about getting your Medicaid and social security turned back on and picking a primary care doctor before Tuesday.”
“Okay, I can do that,” I agreed.
Later on that morning I found myself in Tanya’s office getting phone numbers to call and a list of doctors that are in the area and covered by Medicaid. I took the numbers and lists back to my room so I could spend some time with them. The first thing I needed to do was pick out a primary care doctor. That was going to be challenging.
I thought I wanted a female. I thought a female would be more empathetic and patient and understanding. I needed someone that was currently accepting patients. I wanted to look at the pictures of the doctors and pick someone who was smiling and had smile and laugh lines not frown lines and not, what one of my current PCAs, Tyffanie, would call, resting bitch face. I also wanted someone that was within half an hour of me.
All of my other specialists I was keeping the same and for the latter part of my stay at Hell-Crest Commons I had been seeing my regular specialists, except for Dr. Green who had retired. I was really sad because she had saved my life from my brain tumor that no one else could diagnose, and she had persisted when everyone else wanted to just give up and somehow blame me for all of my symptoms.
Now, instead of Dr. Green for after discharge, I had done some research and set up an appointment with a local nephrologist whose name was Dr. Rose who said he would be happy to take over prescribing my IV fluids. Jillian had promised me that she would speak to him on Monday.
Jillian had told me that she would discharge me with a week’s worth of IV fluid and IV supplies and that Dr. Rose would see me within my first week home so that I would not have to go even a day without fluid or supplies. She had also explained that I would be discharged on Tuesday with all of the medication they had for me in the Pyxis and that I would be given a prescription for 30 days worth of medication. Jillian and Tanya were going to make sure that I had my first appointment with my new primary care doctor within my first week or two of being home as well.
“Everything is going to be all set for you,” Jillian kept assuring me. “You don’t need to worry. I know you’re a worrier, but you don’t need to be. Just trust us.”
I just smiled at her and said ok, but in my head, I was thinking to myself. How many times did you almost kill me and send me to the ER and ICU? And you’re telling me to trust you?
The primary care doctor I eventually picked was a nurse practitioner named Karen who was located in Lee, MA which is about 30 minutes from me. I just hoped and prayed I made the right choice as I called the office and made the appointment for 10 days after discharge.
Then I called up Medicaid gave them my new primary care doctor and informed them I would be leaving long-term care on Tuesday. After that, I called Social Security who would be reinstating my SSI once I left long-term care.
Once I did all that I felt so proud of myself for being so independent and acting like a real adult. I may have had my bunny Buttercup cuddled in my arms, but that was just because she made me feel safe. I was moving and shaking and making things happen.
