Room 331

I have a vague memory of the trip from the Intensive Care Unit to the Progressive Care Unit that Friday. I know they are located just across the hall from each other because of the tour of the hospital I took before my surgery. It was a short trip to PCU room 331, but I remember feeling nervous. I felt so awful, how was it possible that I wasn’t ICU material anymore?

In the PCU, the slew of nurses, techs, doctors and therapists continued. I had to keep doing the breathing tests and would still get x-rays every so often.

One Awful Night
My first night in PCU was horrible. This was the only time I came in contact with anyone in the Baylor system who I felt did not care about me or my pain and feelings. During my stay in the hospital, I would often call my nurses to my room for a variety of very necessary reasons — maybe I was in a lot of pain and needed more pills or I just had a pill but was in so much pain I needed help rolling over to another side to try to get comfortable or maybe I was worried my catheter was kinked and needed them to check it or I just needed someone to tell me I was ok and only had a little more time to go ‘til my next pill. Whatever. You just need nurses — good nurses — when you’re in these places.

This first night, the overnight nurses sucked. There were two of them, both women, if I remember correctly. One seemed irritated every time I would call her into my room. My previous nurses always seemed happy to help or at least didn’t make me feel stupid or weak or wrong for asking for the help they are supposed to provide and I needed them for. This is a real need. That night was the first time a nurse not only flat out refused to give me pain meds upon my begging, but also didn’t offer any other help to deal with my pain. One of these nurses even changed my catheter bag and then couldn’t get it hooked back up to the bed, so she just laid it in the middle of the floor and left.

That was the longest night I remember having in the hospital. My mom stayed the night with me that night (my parents took turns staying the night with me each night except the first night in ICU when my sister Wendy stayed with me). I kept trying to sleep through the pain, but I was constantly waking up, calling to my mom and crying with her about how awful it all was.

After that nurse shift, I once again had phenomenal care at Baylor. Thankfully, those awful nurses didn’t treat me again. I even got a fantastic surprise when Nurse Tricia, who as I’ve said multiple times is my favorite nurse ever, got to work in the PCU and take care of me.

Walking
The Occupational Therapists returned when I was in PCU. Of course, they forced me out of bed. But this time I didn’t get to just sit in a chair. I had to learn to walk.

Using a walker and with my OT on one side and parents on the other, I learned how to put one foot in front of the other and start moving. It was hard. It was so, so hard. Every thing you take for granted before scoliosis surgery is a new sensation after it. It felt all wrong and different walking. I remember how happy my parents would get to see me up and moving. Everyone would talk about how tall and straight I looked. I felt it, too. (note: there are pics of me walking, but my mom has them on her computer, so I'll have to post them later.)

During my first walk, I moved from my room down the hallway and back again. It took forever. Baby steps. They asked if I wanted to keep going. Ummmm. No. And I went back to bed exhausted.

Over the next few days, I would walk multiple times. One- because sometimes I was forced to and two- because it helped me pass the time. Passing time feels like dealing with pain. Time is one thing that you just have to get through when you’re in an extreme amount of pain. It’s almost a tangible obstacle you fight against. Anything you can do to get through more time and get closer to that next pill or until that happy day when you don’t feel bad anymore is something worth doing.

Eventually, I would walk several times a day, with my walker and my parents, up the hallway by my room and down three more halls to make the square back to my room. My parents were ridiculously proud of me during these walks. It’s funny because everyone was. Even people I didn’t know. Other PCU scoliosis families would see me, or any patient really, walking down the hall and would stop and smile and give encouragement. They understood. They knew what a struggle this was for me because their loved one was also struggling. They couldn’t do it for me, but they could smile at me or say something encouraging and send me love and that was enough. It chokes me up just to think of these people and their smiles. I want to thank each of them- these wonderful people who I will never see again but who helped me when I needed it so much.