After a few weeks my head started to clear. I felt much more like myself. I figured I was here so I would be happy. Although there were still plenty of dark times, I was now able to enjoy many fun times too. With the world’s best cheer squad (my extended family), how hard could it be?
The ICU consultant who was in charge of my care was a youngish Asian doctor named Sean. Sean was a gentle and kind man and quite frankly pretty spunky. In mid-January my sister was with me during one of Sean’s consultations. The blinking communication was a cross between charades and bingo. When someone worked out what I was trying to say, they would announce it proudly. I must have been in a cheeky mood that morning because as Sean wrote notes and discussed my case with junior doctors, I began to spell to Ali. Once she had worked out what I was spelling, she announced it loudly without thinking. As the words passed her lips, she realised what she had said. “Sean is sexy.” Ali was mortified and I laughed hysterically.
Around the same time, Sean thought I might have had a fungal infection in my mouth. He told me that when they did my mouth care that afternoon, they wanted to treat me. Mum came to visit in the afternoon. I started to blink that Sean thought I had a fungal infection. As was often the case, Mum jumped in before I had finished and guessed ‘fungus’. The way she said it was so funny, I began to laugh. I did one blink for yes. She said “No it’s not. What is it?” I started to spell again. F …. U…… N ….. G. “Fungus” said Mum. We both started laughing hysterically. This went on several more times, each time us sinking deeper into hysteria. Eventually I got her to understand that I was in fact telling her I had a fungal infection.
The physios started taking me upstairs to the rehab gym on the stroke ward. This was another privilege that I was extremely grateful for. It was labor-intensive for the hospital; I needed 2 physios and an ICU nurse. In the gym my arms were placed in slings suspended from the roof. The slings are designed to take the weight of your limbs, making it possible to move them with much less power than normal. I was able to move both my arms, slightly more on my right side. This was the first confirmed movement on my left side. The physios were really surprised which left me feeling excited.
Warning: This is riveting viewing!
My back pain continued to be a big problem. The suctioning of my trachy always led to violent coughing which put a lot of strain on my already delicate back. Family members would often rub my back and get me heat packs at all hours of the night.
I also had some issues with my breathing in mid-January. I had no voluntary control of my breathing, so my sub-conscious brain had complete control. I started skipping every 4th breath. The first few times it happened, it completely freaked me out. I sat patiently, hoping that my breathing would automatically restart. I soon got used to it, and rather than being scary, it was just annoying. Several times it happened while doctors were trying to listen to my chest. Most of them made no comment. I can remember one day being examined by a female doctor who hadn’t seen me before. She thought I was doing it to annoy her and got quite cranky.
The nose and mouth provide warmth, moisture and filtration for the air we breathe. Having a tracheostomy tube (trachy) however, by-passes these mechanisms. Often a trachy patient needs their air humidified to keep their chest secretions thin. During the day I breathed room air with no problems. At night, I was hooked up to warm, humidified air. I’m not quite sure why I needed it at night; maybe because I was lying flat, maybe because I coughed less and was suctioned less. I don’t know.
One morning I woke up very distressed. I was having trouble breathing. Steve noticed the humidifier had not been hooked up at night. This resulted in me having thick mucus built up in my chest and bronchospasm. I was given ventolin and hooked up to humidified air. Relief came as my breathing returned to normal.
The ICU has a small courtyard. It is really a small patch of concrete, but it is outside! I still needed a nurse with me 24/7, and so it was a big deal to get outside. ICU nurses treat the whole patient and so they made it a priority to find time to get me out there everyday. Most days I got out there for 45 minutes. It was so beautiful to feel the breeze on my face. My eyesight was still blurry but I was able to enjoy the green grass of the cricket ground across the road.
Here is an excerpt from an update my Dad sent to our family friends. I find it interesting to read about the journey from my family’s point of view.
“Movement is not great and measured in millimetres but still some progress and shows neuroplasticity is at work.(referring to my work in the slings)
On the down side Steph had a couple of fairly miserable days on Sunday and Monday where she was nauseous and had trouble with her bowell. So whilst Steph receives positive feedback she was otherwise feeling down.
The other very significant issue which is effecting Steph physically and mentally is her jaw. Stephs jaw is locked closed and she is receiving no messages at this stage to release it. She has had a dose of botox but that seemed to have minimal effect. Today a maxilo facial consultant saw Steph and is planning a much stronger dose of botox coupled with a machine that assists the muscles to relax. There is only one of these machines in Australia and he is trying to get it to Canberra to get to work. However the jaw really depresses Steph but hopefully it will be eased soon. At the moment to brush her teeth and do oral hygiene she receives anaesthetic to knock her out. This happens every day and is a very tedious process. Once the jaw issue is controlled then Steph is likely to be transferred from the ICU to the rehab ward where the hard work will really start.
We have to be very focused on keeping Steph very positive about her progress and trying to ensure that Steph thinks only about her recovery. If you have read Running Free then you will have a good understanding of what we mean.
Again while we feel very positive about Stephs progress to date we hope that you can visualise Steph trapped in her bed ,unable to move 99% of her body and feeling very frightened and insecure about her future.At the same time she feels all the same pain that we feel and lying on your backside 24 hours a day can be no fun. Steph also has enormous difficulty getting her neck comfortable and it id distressing for those looking after her trying to get it into a position of comfort and to stop the tears of pain.
The whole medical team is very focused and dedicated and the physios feel like they have one big experiment to work on which is really good because they are very focussed. They dont get to see Locked In cases very often.
That is about all the news for now and will report again in a few days.
Syd and John”