Every morning, I was taken for a shower. This was always very stressful and exhausting, and sometimes painful. I was rolled to and fro in bed so that a sling could be placed under me. The sling was then attached to a hoist and I was transferred into a shower chair. During the transfer, my head would often flop forward. You just can’t imagine how uncomfortable it is to have the weight of your head dangling off paralysed (but fully feeling) neck muscles. Once in the shower chair, my head was supported on a pillow and I was pushed through ICU to the shower. I could feel other patients look at me as I moved through the ward, which made me feel very self-conscious.
The pillow supporting my head would often slip out, allowing my head to hang unsupported. My arms would often slip off my lap, leaving them dangling by my side, stretching the ligaments and nerves in my shoulders. I was unable to move or make a sound and therefore powerless to get the nurses attention. I had to stay calm and wait for the nurse to notice the problem.
I could not sit under the shower because my trachy could not get wet. I longed to feel hot water running over my head and face!
When I had been washed, I was wrapped in towels and taken back to my bed. I was then hoisted (in my now wet sling) back into my bed. By this time, the sling was pretty cold. Once in bed, I was dried and rolled from side to side as the nurses dressed me. By the time my shower was completed, I felt like I had run a marathon. Don’t get me wrong, the nurses all looked after me so well. I was just so hard to look after.
My back pain was an ongoing issue. It kept me awake at night and affected the quality of my awake hours. Suctioning of my trachy was a necessary evil; while it kept my airway healthy and clear, it caused violent coughing. This in turn caused strain in the muscles in my back.
During the day, I sat in a stroke chair. Lying in bed all day increases your risk of chest infections, and being more upright ensures your body is able to maintain its blood pressure in an upright position. So after my shower I was hoisted again from bed to the chair. I hated being in the chair. I could never get really comfortable. My head flopped around and I felt like my visitors spent half their time trying to prop my head up with various pillows. Mum bought every bizarre-shaped little neck pillow on the market. None of them compensated for a complete lack of head and neck support. Cleaning out cupboards recently I came across a few of these pillows. I briefly thought they might be good for travelling, before concluding that the mere sight of them made me sick.
It was recommended that I listen to music during the day to stimulate my brain. I love music, so initially thought this was a great idea. I started off using little ear buds. I had playlists sent to my by friends – I was set. The joy was soon replaced by frustration. Nurses would talk to me but I had never worked hard on my lip reading. I couldn’t move to remove my ear buds, nor could I make a sound to let them know I wasn’t hearing anything they said.
After a lengthy blinkathon, my family realised the problem. So when I was listening to music, they put big ear phones on me. I was so happy to have found a solution. Now the nurses would see I was listening to music, remove the earphones, speak to me and then kindly replace my earphones before walking away. Sounds foolproof right? BUT NOT! Nurses continued to talk to me with my earphones on. Maybe I looked so good in them, they thought I was sporting a new fashion accessory. I hated not knowing what they had said to me, so soon became reluctant to listen to anything.
Each day the physios and occupational therapist came to run me through exercises. I then repeated these several times a day with the help of family. Doctors came several times a day and nurses took obs every few hours. Blood tests were a regular occurrence as well. Then there were the less frequent procedures such as changing catheters, replacing blocked naso-gastric tubes, x-rays.
In the afternoon, I received my mild general anaesthetic so my jaw could be opened and my teeth and mouth cleaned. As the days passed, my tolerance for Propofol increased. It wasn’t long before I needed a high enough dose that caused my blood pressure to drop considerably. From then on I also needed an extra drug to maintain my blood pressure.
So although I didn’t do much during the days, they were quite full.
At about 5 or 6pm, I was “allowed” to get back into bed. This was always such a relief. I felt more relaxed in bed. At about 9pm the routine began for bedtime. I was given a sleeping tablet. (For any of you that have been unfortunate enough to spend time in ICU, you will know that an ICU is never quiet. Patients arrive on the ward 24 hours a day, doctors see patients there 24 hours a day and patients need treatment 24 hours a day.) Once I had a sleeping tablet, I was positioned by the wardies.
Whenever Ali tucked me in to sleep, she worked methodically, making sure I was comfortable from head to toe. “Is your left arm comfortable?” she’d ask. One blink – yes. “Is you’re right arm comfortable?” she’d ask. I would answer yes with one blink. She’d then move on to my legs. They were often very uncomfortable. If I answered ‘no’ she would then start moving them into a variety of positions until they were comfortable. She would pretend to be my Fairy Godmother, flapping around with a wand. “Anything else? Your wish is my command.” She would not settle until she was convinced that I was comfy.
I never slept very well. I was re-positioned by the wardies every 3-4 hours. I was also woken often by pain. My back would ache terribly and I would lie awake waiting for my family member on night duty to wake. Steve never woke too much. I guess years of practice pretending not to hear crying babies had come in handy. Mum was a worrier. She would often jump up, get really close to me and ask “Are you OK?” Eventually I explained to her that she was actually waking me up. I felt bad telling her because she worked so hard making sure I was as comfortable as possible.
There were times I really wanted my babysitter to wake up. I was attached to a heart rate monitor that would alarm if my heart rate increased. I worked out that if I got myself worked up, my heart rate rose, the monitor alarmed and my family woke. Goal achieved! This came in very handy.
Another of the joys that comes with being immobile, tube fed and full of drugs, is constipation. I had never been really constipated before. What a joy! Now I understand what Gran had to deal with. So when my belly became distended, the nausea set in and the pain increased, I would get an enema. This was a new experience for me. I can remember late one night waking in pain. Ali was with me that night. I was always more relaxed when it was her turn to stay the night. I’m not sure if she got any sleep, but it felt like the moment I was awake, she was by my side trying to work out what I needed. Often I only spelled out a couple of letters before she had worked out the problem.
This night she convinced my nurse to give me an enema right then. While we waited for the ‘result’ we were after, Ali chatted to me and rubbed my back. When the deed was done, I was elated. I furiously blinked my heartfelt thanks to the nurse that had stopped me from exploding. Ali translated and I can still remember the nurse saying “I have never been thanked so much for an enema”.