About an hour earlier I had arrived at the only rehab/nursing home in the area that would take someone as medically fragile and medically complex as I am. The nursing home was called Hillcrest Commons, but I had started to call it Hell-crest Commons. From the moment I rolled in the door I knew I was in trouble, but when I med with the nurse practitioner that would be in charge of my case while I was there, her name was Jillian, I had full force alarm bells going off as loud as possible in my head. She basically told me that my disease wasn’t really as bad as I thought it was and that I didn’t need my tube feeding or my IV fluids. I knew this was wrong, I knew what the leading experts in the world on my disease had said about my treatment and I was going to listen to them not her. They had said i would need high volumes of IV fluids with electrolytes for the rest of my life and that I would need tube feeding through my J tube until I couldn’t tolerate it anymore and than I would need TPN for the rest of my life. I would have tried to explain this to Jillian, but she didn’t give me a chance and didn’t seem interested in listening.
After Jillian left, I felt like I had just been through an earthquake, and knew more were coming.
I was relieved when my nurse who was assigned to me that night, Mary-Beth came in with the IV bag and pump and hooked me up to my sugar water with potassium. At least now I knew my heart wasn’t going to go into any lethal heart rhythms for tonight and that I wasn’t going to dehydrate or go into a hypoglycemic coma.
“We need a weight on you,” she explained as an aide came in with a Hoyer lift.
The nurse and the aide put a blue mesh material pad underneath me and then clipped the corners of it into the Hoyer lift machine that had a scale built into it.
“How tall are you?” she asked me.
“4’10,” I told her.
“You’re just a little peanut!” she laughed.
“I’ve been sick almost my whole life,” I explained. “It stunted my growth. Plus everyone in my family is short anyway.”
“You’re going to start going up,” the aide told me.
Slowly the lift pulled me up off of the bed and into the air. I never minded the Hoyer lifts, they always felt kind of fun and relaxing to me. Kind of like a cross between a hammock and a simple amusement park ride.
“61 pounds,” the aide said.
I couldn’t believe I had lost that much weight. It kind of frightened me. I was glad that I hadn’t seen myself in the mirror lately. I didn’t think I would have liked what I would have seen looking back.
The aide and Mary-Beth lowered me back down onto the bed and had me roll side to side to get the pad out from under me. Then the nurse gave me the pills she did have for me that didn’t need to be specially delivered from the pharmacy an hour away in Springfield. I was horrified to discover that she didn’t have my fludrocortisone or midodrine. My blood pressure was going to be in the negative by the time those came in the following afternoon. Plus I knew I was going to be all weak and out of it all morning from missing them and my mom, dad, and grandparents were all coming up tomorrow morning to celebrate my 24th birthday.
Knowing it wasn’t Mary-Beth’s fault, and that there wasn’t anything she could do about it, I just let her crush up the pills she did have, mix them with the liquids she did have, and push them through my J tube. Because they couldn’t do IV nausea medication I spent the next few hours unable to sleep because I was swallowing back J tube med vomit.
Eventually, I fell asleep around 2 AM and was woken up by the overnight nurse at around 5 AM because she had to turn off my tube feed pump an hour before giving me my thyroid medication and she didn’t know how to work my pump. Their feeding pump was coming from the pharmacy for me at the same time as my medications. I wiped my bleary eyes and showed her, almost fell back asleep, and then was woken up all the way again when she came in to give me my thyroid med at 6 AM.
An hour later I was still awake when the morning aides came in for Jenny and me.
“Good morning, are you ready to get washed up?” one of them asked me.
“I guess,” I nodded feeling a little overwhelmed so early in the morning after getting so little sleep. But the aide looked all business and like she wasn’t going to be expecting any answer except for yes.
She was busily getting a bucket, soap, and washcloths ready and was going through my clothes. I didn’t like her going through my clothes. They were my clothes. I wanted to pick out my clothes. I was very particular about what I wore and who touched my stuff.
“Can I pick out an outfit?” I finally asked her.
She looked taken aback. I don’t think she was used to having fashion-conscious 24-year-olds as residents.
“Uhh, ok” she agreed.
“Can you bring me over a few t-shirts and I’ll pick one,” I suggested. My voice was trembling and slurring. A side effect of not having my proper medications in me.
She brought me over some t-shirts and I chose one with a panda and a rainbow on it, then I chose light purple tie-dye leggings to go with it. My boobs had shrunk so much from all the weight loss that I didn’t need a bra.
The aide was rough on my GJ tube when she washed me up, and I had to keep reminding her to avoid my port dressing when she got near my chest, but she got me all washed up and dressed so I was happy about that. She forgot about brushing my teeth and tried to sneak out. I had to remind her that I had a toothbrush packed in one of my bags along with Sensodyne toothpaste and then she helped me brush my teeth and put Dove Fresh deodorant on too so that I’d look nice and be all freshened up for my birthday and my visit.
Back when I was nine or ten I never would have guessed that this was what my 24th birthday would look like. It was pretty depressing, but I was fighting so hard not to let it get to me. Your life is 10% what happens to you and 90% how you react to it. I read that on a poster somewhere, but it’s totally true, and I was trying to keep reminding myself of that.
My mom got there first. I just hugged her and cried without saying anything, and she just hugged me back, but then after I hugged her a little too long she let go so I did too, even though I would have liked to hug her longer. Then my grandparents and dad got there. Everyone just tried to keep things light to cheer me up. My mom and dad had got me a bunch of different art projects to keep me busy while I was stuck there, my grandparents had got me some clothes and money. Everyone had gotten me cards and I had gotten cards delivered from other people as well. I had everyone tape the cards up on the wall near my bed so that I would be able to see them all the time and think about all of these people that loved me.
The whole visit my eyes kept trying to close, I was shaking, slurring my words, and I was super weak from low blood pressure from missing my medications. As much as we tried to dance around the fact that we were spending my 24th birthday on a nursing home floor for those who required medically intensive care, it was impossible to ignore elephant in the room and once everyone left, I grabbed my bunny Buttercup, hugged her in close and cried hysterically into her bow.
Once my medications were all delivered I physically felt better, but I knew I couldn’t trust Jillian and I didn’t trust most of the aides and some of the nurses either. Hillcrest Commons just wasn’t a place I felt comfortable. I could tell Jillian didn’t understand autonomic SFN and had already decided it wasn’t a real thing and made her judgments about me. It very much reminded me of my dad. The aides were just overworked and didn’t understand how someone so young, that outwardly, though very thin, looked so healthy, could be so ill. The nurses were mostly better but some of them were influenced by Jillian so they didn’t bother to try to understand my autonomic SFN and were passing judgment on me.
I had arrived at Hillcrest Commons on a Friday, so I was stuck in bed in the room all weekend because the policy was that you couldn’t transfer in and out of bed until you were cleared by PT. I started both PT and OT on Monday morning. The PT assigned to me was Lynn, and the OT assigned to me was Laura.
We started slow with PT and just practiced moving my legs around in bed. After a couple of days of just moving my legs around in bed, we worked on core muscles in bed for a while. For two weeks we exclusively worked in bed. I felt like we were moving too slow because I was dying of boredom lying in bed all day, but Lynn explained that everything had to be done in the right order and it had to be done safely due to my orthostatic vital signs and how dramatic they were. My blood pressure would go from 95/60 in the laying down position to 80/50 when I was sitting upright and trying to stand.
Jillian kept asking me why I wasn’t getting out of bed yet, and I had to keep telling her to talk to Lynn. She also kept telling me that soon we would have to increase my water boluses through my J tube so that we could decrease my IV fluids.
“I need my IV fluids because my kidneys can’t retain potassium or certain other electrolytes. If we decrease the IV fluids, not only will I dehydrate, but I will also drop my potassium levels as well as other levels. When my potassium levels drop I develop cardiac issues like A-fib.” I tried to explain it to her.
“Well we can give you potassium through your J tube,” she told me.
“I don’t absorb it properly through my J tube,” I explained.
“Well isn’t that convenient,” she said.
“I don’t,” I told her. “If you would just contact Dr. Green she would explain everything we’ve gone through so far to you”.
“I don’t need to contact Dr. Green to know how the human body works, I went to school for that.” Jillian would insist. She knew how to get my blood to boil. I knew it was only a matter of time before Jillian did something that severely compromised my life.
Eventually, after a month Lynn got me to the point where I could do a stand and pivot transfer out of bed and into the wheelchair so that Lynn and Laura could take me down to the rehab gym for OT and PT and so I could get out of my room for some of the day and could go sit in the dayroom or go to activity groups. It was like the world had opened up for me. Now I was able to talk to other residents, talk to visitors, talk to all the nurses and aides and volunteers, and pretty much anyone else. I felt less alone now, so I felt a little less scared. At least now Jillian had slightly less power over me. Plus I always had my cellphone and laptop with me in case I needed some serious help.
For the moment things were stable. I had PT and OT, each, five days a week. I had a nurse change my central line dressing once a week. I was hooked up to sugar water with potassium every day through my Port-a-cath. I was hooked up to Peptamen Prebio 40 ml/hr 24 hours a day through my J tube. Although Jillian kept insisting that the rate needed to go up. Even though I explained back to her that no matter how slow we titrated it, I couldn’t tolerate a rate increase. I was hooked up to a G tube drainage bag continuously and took little sips of clear liquid throughout the day that drained right back out into the bag. I was on 2 L of oxygen while I was sleeping and then if I was short of breath during the day I would hook up to as much oxygen as it took to get my O2 sat above 92%.
I was getting along really well with my roommate Jenny. Whenever I was wearing one of my Hello Kitty T-shirts or shorts or pants or hair bows, or using a Hello Kitty blanket, I would show it to her and she would get all excited and show me her Hello Kitty stuff. She had the sweetest, most beautiful, infectious smile. Sometimes we would color together and make coloring sheets for each other or make other craft projects together.
Her parents came to visit almost every day and would bring her special snacks and foods that she liked because she had celiac disease and could only eat certain things. She had a G tube but she also ate by mouth. The staff had a bad habit of not checking her trays to make sure the kitchen had sent her the right diet. The kitchen would send her food with gluten in it even though her meal ticket clearly stated she had celiac disease and needed a gluten-free diet. Then the staff would not bother to check anything and feed her the gluten and her stomach would bloat up so bad that she would look like she was nine months pregnant and she would moan and cry. So I had started policing her trays and telling them that she had food in the fridge, which meals and snacks were her favorites, and how she liked them prepared. I would then make sure they followed my instructions preparing the food, and would nonchalantly chill out in the room while they fed her to make sure they didn’t rush her and feed her too fast.
One day after I’d been at Hillcrest Commons for about 2 and a half months I heard them call a code blue over the intercom while I was at PT. The code blue was being called to my room. I felt my heart jump all the way up my throat and get lodged there, Jenny! I immediately stopped what I was doing.
Lynn tried to get me to keep going, but I couldn’t, I needed to know what was going on with Jenny, I felt sick all over.
Lynn brought me back from PT early. I just sat in the day room because I obviously couldn’t go into my room. No one could tell me anything or give me any updates, but I just knew it wasn’t going to be good. About an hour later people were coming out. I saw Sarah, the unit manager, so I went up to her for an update.
“Is she…?” I trailed off.
“She passed. She was a DNR, we couldn’t do much.” Sarah explained.
I just started bawling my eyes out right there. Jenny had become almost like a little sister even though she was twenty years older than me. This was tragic, how could God have taken her from me? This was so unfair. She was such a happy beautiful person. Now we could never share Hello Kitty again. We could never color pictures for each other again. We could never do crafts together again. I could never make sure she got her favorite treats again, like her chocolate pudding snackpack.
A few hours later her parents came up. I still hadn’t been allowed back in the room, but I didn’t want to go in there anyway without Jenny to smile and laugh with. They came up to me, sitting in my wheelchair in the day room, and without saying anything they each just gave me a big hug. I melted into their arms and cried.
Before they left that day they gave me some of her Hello Kitty clothes, Hello Kitty coloring books, and Hello Kitty dolls to remember her by. I thanked them and cried again.
That afternoon I cried so hard and so long that I got a really bad migraine. Jillian ended up giving me some liquid Dilaudid through my j tube for the headache. Even she could understand how upset I was apparently.
When I was finally allowed back in the room, every trace of Jenny had been removed, It was like she had never been there, I hated that. How she had just been erased just like that. That shouldn’t just be able to happen to a person just like that.
It comforted me to know that I knew in my heart that I would never forget Jenny, that she would live on forever inside me. I squeezed one of the Hello Kitty dolls her parents had given me.
I had my own room for the longest time after that. It was actually kind of nice once I got used to it (I still would have much preferred still having Jenny for a roommate).
A short time after Jenny passed Jillian decided we needed to have a meeting with my parents, nursing, PT, OT, her, and the department of mental health that had gotten involved in my case at my parents’ insistence. The meeting was set up for the following week, and the dread in me immediately began to build. I didn’t know what I was in for, but I knew it would be bad.