Hospital memories part 3 – Appreciating the simple things
I was back in Glasgow but nothing seemed different. I was still lying on my back staring at a grey ceiling. Couldn’t move, couldn’t breathe, couldn’t talk. I couldn’t help but feel disappointed.
In some way I believed returning home would have instantly changed things for the better. Home has always been associated with normality and safety. I had moved house many times in the past living all over the country and when things would go wrong, I would come home. I wasn’t deluded, I understood that the flight from Spain to Scotland wasn’t going to heal me. Still, in the back of my mind the thought of being home sparked a glimmer of hope.
I was surprised that the doctors and nurses speaking English frustrated me.
You would think it would be a relief. After a week of feeling alienated by a language barrier I suddenly had access to all my medical notes and answers to all my questions. Unfortunately, I still couldn’t ask the detailed questions I wanted to. The tube was still locking my jaw open and making any speech impossible. It was back to the alphabet chart and sticking to the basic questions. I would be surrounded by men and women (and a few who still looked like children) wearing white coats and holding clipboards. As they spoke amongst themselves I often wanted to interrupt with a question. I would fail to get their attention and the conversation would move on. In time I would learn to be the boss of that situation but at first I felt like I wasn’t even in the room.
Thankfully removing the intubation tube was a priority during the first couple of days back in Scotland.
I still could not breathe on my own but the goal was to remove the tube and perform a tracheostomy. To quickly explain, the current tube going through my mouth, down my throat and into my airway would be removed. They would create a hole in my neck to provide direct access to my airway. A much smaller tube would be inserted, leaving my mouth and throat unobstructed. The new tube would be attached to the ventilator and control the inflation and deflation of my lungs.
I pleaded and I begged (as much as you can without the power of speech and movement) for them to do this as soon as medically safe. The intubation tube jamming my mouth open had now gone beyond discomfort and was causing pain 24hrs a day. I think it was the second or third day of being home that they performed the procedure.
It would be impossible to exaggerate the sense of relief when I woke up. I remember lying in bed silently opening and closing my mouth until my jaw hurt. Just because I could. Sometimes because I panicked and needed to check that the old tube wasn’t back. For the first time in many days I could smile at my family. Did they think I had been choosing not to smile? The doctors and nurses must have thought I had a screw loose. Lying in my position with a grin from ear to ear.
Over the next month I very slowly regained my voice. My first words were nothing more than a high-pitched squeak. Talking through a tracheostomy is a completely different technique and it took patience to relearn something so simple that is taken for granted. More on that another time perhaps.
It was only after the intubation tube had been removed from my mouth that I realised I had not eaten or drank anything since before the accident. I hadn’t even thought about it until then, must have been the heavy medication and the stress suppressing my appetite. A week had passed and I had been getting my fluid and my nutrients through a drip. I immediately started thinking about what I wanted first. A curry or fruit or chocolate or a steak???? More than anything I just wanted a drink. Not only was my throat dry, I needed something with flavour. Water would do but I was craving fresh fruit juice. I got the attention of my nurse and the alphabet chart came out to spell one word, JUICE.
I was devastated. I wasn’t allowed to eat or drink. They were worried that I hadn’t regained my swallow function yet. If I hadn’t then any liquid or food would go straight into my lungs, something that would be seriously dangerous. I knew they were wrong, I knew I could swallow fine. They wouldn’t listen and insisted I wasn’t ready. The frustration and my impatience just made the craving worse.
I had to wait over 5 weeks for them to let me swallow anything other than saliva.
As days turned into weeks I became desperate. I would lie in bed trying to remember how certain things tasted. I couldn’t stop thinking about food and drink.
Eventually I talked the doctors into a slight compromise. They would let me take a drink of juice through a straw, swirl it around my mouth but then I had to spit it out. So bittersweet. My taste buds seemed hypersensitive and the cold juice was hitting the spot. Then I had to spit it out. Just as every natural instinct in my body was telling me to swallow I was denied the satisfaction.
I recall how much stress this compromise of mine caused my mother. She hated seeing me so frustrated so would encourage me to have a ‘drink’ but as soon as the juice was in my mouth she would begin to panic. She knows me well and she knew I was inclined to go for it and just swollow. It was only a matter of time until I gave in. She pleaded with me to spit it out straight away. I would fight the urge for as long as I could before doing the sensible thing. She could see my disappointment every time. As much as she worried about my health she wanted to see me happy.
Despite the huge temptation to swallow I resisted. Every time I came a little bit closer. I knew it would be okay anyway, I know my body and I knew I could swallow. Still, for over five weeks I fought the temptation.
After five weeks of desperate nagging and arguing I got an appointment with a speech/swallow therapist.
They would test my reflex by giving me some food and drink to swallow, starting with fluid and building up to solids. Everything was stained with a bright blue dye and after each test the contents of my lungs would be suctioned and inspected for any presence of the blue colouring.
First off, some bright blue water. I was just going to enjoy this. It may seem strange but I forgot how wet water was. Five weeks worth of waiting was finally over. The nerves did kick in watching the contents of my lungs rumbling along the suction tube, dreading the sight of anything blue. I got the all clear.
We moved through the stages. Vanilla ice cream, Juicy fresh strawberries, mature cheddar, hot buttered toast, wholemeal crackers. All bright blue and all delicious. I have eaten in Michelin Star restaurants and never came close to that level of satisfaction.
I had an extra helping of the ice cream with some strawberries chopped through it just for good measure. As soon as the therapist left the ward my nurse gathered a collection of juices from the fridge. I had spent 5 weeks imagining what it would be like to swallow them, 5 weeks of restraint to stop myself finding out. It was all over now and my god, it was amazing.
One of the toughest tests of patience and self-control I have ever faced. So many people live being peg fed or on IV fluid and nutrients. I have the greatest of respect for them and I try to keep them in mind if I am complaining about my food.
As this new life of mine was beginning I was learning to appreciate the simple things that are taken for granted. Moving, breathing, talking, eating and drinking. You wouldn’t think they are so precious until they are taken away.