On Monday about 8 am, the Dr told me I was going home that day! I was shocked. It was only day 5 and we had originally planned 7 days in the hospital.
I called hubby at work and asked if he could get off work and how soon. I wanted him there with me for the final discharge instructions and physical therapy so he knew how to help me get home. I was suddenly feeling afraid and overwhelmed, not ready to leave the safe hospital world that I had grown used to and wanted hubby there to support me as well.
Hubby called back and said he was leaving work, heading home to change, then would be up to the hospital. I expected him around 10 or 11. I told him which soft, loose pants to bring me, which top, and decided to go without underwear or bra as the elastic would be too painful on my incisions. I did not think to ask for my coat, thinking the cold rain would remind him of my need for that.
So much happened that final day. More blood work. Visits from so many doctors, physical therapists, occupational therapists, pharmacists, home care coordinators, social workers..so many people on a team making sure I was going to be safe and healthy at home.
It was a whirlwind of information, and I wished hubby would hurry. My lunch came and I called, he still had not left home. I was getting angry and hurt now that he didn’t do what he said he was going to do, and that I was all alone, and that he was going to miss the important information.
Sure enough about 2pm PT lady came for me and still no hubby. We went to the gym to practice the stairs to make sure I could get into my home and up to my bedroom. She had me walk without the walker a little, just holding her arm and hand, and that felt amazing. Then we practiced getting in and out of a car safely. I have to do it without bending or twisting- not so easy, that’s why we practice the maneuver.
This lady saw how thin my right leg was and asked about the atrophy. I explained that this surgery corrected 27 years of nerve compression, that I’m stronger and can feel it now. She nearly cried for me, and I nearly cried too, but I wasn’t letting myself believe it yet. Not for about 2 more weeks.
She gave me some other challenges, let’s see if you can walk up the stairs leading with the right leg then. I hadn’t even attempted that in 27 years. I said OK. It took a moment of staring before my leg did what I wanted, something PT calls ‘motor planning’, but then I did it.
Step up. Step up. Pulling myself up with my little right leg. It started quivering after about 4 steps, so we stopped to rest, but I felt like I climbed mount Everest. She wanted to see me lead with it going down now. I was scared. It used to buckle and give out. But I had two railings and a safety strap under my arms, so I said OK.
Step down? Yes! It held! I couldn’t believe my eyes or other senses. That couldn’t be my leg. I went down the 4 steps, very slowly, letting my right leg bear my weight for the first time in adulthood.
When I got to the bottom, my leg was hot, trembling, flexing. I could feel muscles inside of it. Angry little muscles, yes. But muscles working and firing. Such an amazing feeling. I so wished hubby had been there to see this.
PT lady wheeled me back to my hallway and said she was sad I was leaving today, she would love to keep working with me. Then she asked me to walk some more to see how it recovered. It hadn’t. My leg was quivering jelly. I was going to push through and drag it along and she made me stop. She said never push a muscle past fatigue, only up to fatigue.
I was shocked and it showed on my face. I explained that I was used to pushing past that point. She got a little upset and said she can’t imagine any physical therapist asking me to do that, that pushing past fatigue only causes pain, once you lose quality of motion you are doing harm not good. She asked me who told me to do that?
I said it was my dad….she put a hand on my shoulder and said she was sorry and we had a quiet moment of understanding. Wow. And woah.
So many years of abuse, and pain. I felt it all lift and float away in that moment when she understood. Because I understood. It wasn’t me. AF was a sadist. He enjoyed my pain. He taught me to hurt myself, to ignore signals to rest. He would say things like “no pain, no gain” or “nothing in life is easy” or “pain isn’t real it’s all in your mind, you can choose to feel it or not” or “quitters never win”. He was full of sayings like that to fill me with shame for wanting to rest. Well no more.
Now it got confusing as back in my room, the pain from PT was overwhelming. Dr ordered me Tramadol, a weaker narcotic i had not tried yet. I was willing to try, the pain was bad enough, and i figured it might help for the car ride too. The pill and fatigue made me spacey, but I swear two different doctors, a nurse, and the home care rep all gave me different instructions regarding my bandages and suture removal. Again why I wanted hubby there.
Finally about 3pm he did arrive. At that point we were only waiting for the final discharge which took another hour or so. I tried telling him all the information he missed before I forgot, which overwhelmed him, and he could tell I was annoyed but he didn’t know why. I was also dreading the car ride. Nearly two hours of bumpy torture coming soon….
A young girl arrived with a wheelchair. I asked hubby for my coat as he out his on, and he looked frightened. Ummm….I didn’t bring you one, you didn’t ask for one. I tried not to be too hurt and annoyed by his thoughtlessness as nothing could be done now. I was packed into the wheelchair, a pillow behind me, and all my gifts on top of me.
The ride down was alright, but it took hubby about 45 minutes to retrieve the truck from the parking garage. By the time he pulled up, I was in excruciating pain from sitting in an awkward unsupported position. I kept trying to shift in the chair but nothing helped. My spine was on fire.
They said I was not allowed to sit still for a 2 hour car trip and that we had to plan a stop at least once to get out and walk for 10 minutes on the way home to keep blood flowing or something. We pulled into a rest stop about half way home. I got myself out of the truck, but it took an enormous effort. I was stiff and sore. Hubby gave me the walker, but I couldn’t make it move in the parking lot. There was too much resistance compared to the smooth hospital hallway. I went about 5 feet and started crying, tears streaming down my face from pain, fear, and frustration. I asked hubby to walk me back with his arm, the walker was too difficult. It was much harder to get in the vehicle this time than at the hospital, I had to push through the pain and the chills from walking in the cold rain without a coat made all my sore muscles angry and tight. Once back in the truck, he cranked up the heat until the chills subsided, then we headed home again. I hoped it was worth it to follow that advice to stop and walk because everything hurt so much worse now. Every bump in the road went directly into my spine and there was no way to soften the blow.
Finally we made it home. I struggled to get out of the truck. I could barely move. Every muscle was stiff and in spasms. Hubby got me to our porch steps, somehow I went up, only three but it felt like I was ripping apart inside with each step. In the house he had a chair for me near the door. Nice, but it had a curved back so I couldn’t actually lean back on it without causing extra pain, even with the pillows. I sat there a moment and decided it would be best to get in bed.
We started the longest, slowest journey. Step up, moan, whimper, breathe, pause, step up, grimace, whine, breathe, pause, step up, ouch, groan, breathe, pause….until I made it to my room.
Then I stared at my bed. My flat, non hospital bed. And I lost it. I started sobbing. Why did I come home? I wasn’t ready! That trip was horrible torture and now I don’t have an adjustable bed, I can’t do this. I should have stayed in the hospital longer.
Hubby stared at me all bug eyed and helpless as men do with crying women, but even worse because if he touched me it would likely hurt, and he usually says the wrong thing, so he just stared in silence.
In a moment I calmed down, tried to roll into bed, but it was too low and i yelped in pain. Hubby had bought some wedge shaped pillows and asked if I wanted to try it. It made it easier to roll and I got in, but it seemed so hard, like laying on cement! I could feel with my hands that it was soft though, it was only my sore back making it feel hard.
Hubby brought me ice gel packs and slid them under me, covered me with blankets, and then I just waited for the pain to ease. I took a tramadol they sent me home with, but it only made me nauseous and did nothing for the pain. Somehow I made it through the night, by breathing, visualizing, and distracting myself with tv and candy.
I wanted hubby with me that night but was afraid he would bump me in his sleep. We placed a giant body pillow between us in the bed as a barrier, later we named it the “chastity pillow” to be funny, but it effectively kept us apart and me safe.
I discovered I could walk to our bathroom without the walker by holding the dresser, the bedframe, and the walls. PT lady calls this furniture walking. My tiny room and hallway really made the walker impossible upstairs. Plus I wasn’t having balance issues, I was ready to walk on my own and try out my new legs.
Just as soon as I napped.