Bit of a long entry here, sorry about that...but it is the end of my Harefield journey! Clearly not the end of the story though, as a whole new chapter in my life has now started, one I could only dream of being lucky enough to have.
Life on the ward was vastly different from the Intensive Care Unit. The atmosphere there was one I was much more accustomed to, of a more general ward with constant comings and goings of staff, but essentially a lot more privacy and also responsibility for me as a patient. I was still attached to the bi-pap via my trachi, but was able to spend increasingly longer periods on just oxygen, which was given via a high flow mask directly into the trachi. After a few days on the ward, I tried nasal specs for a short time, which was another huge step for me, as I was accustomed to wearing them and had been for the previous to years, so this felt to me like a move towards normality. My family were able to all come into the room (it’s two at a time in ICU) and we were together the five of us for the first time in months.
I would still await eagerly for the physio to come and take me out, and as I was spending more and more time off the machine, I was pushed to walk increasingly further along the corridor, with two physios in tow, one supporting my arm (I was still incredibly unsteady on my feet) and the other pushing a wheelchair so that when I became too exhausted they could push me back to the room. There was a white circle on the floor of the corridor, and I was informed that this is where people aimed to get to, and would then be made to do a little dance of celebration once they had achieved this distance. Having been told this I instantly decided I would reach it by the end of the week, and did so, triumphantly, my wobbly legs only allowing a short wiggle of a dance before I sat hurridly down in the wheelchair with a bump.
By now I was eating fairly normal foods, although everything still had to be soft and moist, as the trachi meant swallowing was still difficult. My family began to bring in bits and pieces of food for me – my grandma made a vegetable soup and drove it up, the cook at A’s work would prepare me little lunchboxes with a variety of salads and fresh foods – the home cooked taste was indescribably luxurious and helped increase my appetite and eagerness to eat.
My confidence increased with my progress, and I would try and stretch myself a little, by getting out of bed myself (a long and laborious procedure but I learned little tricks like rolling onto my side first before attempting to move to an upright position) and brushing my own hair. I was attempting to move back to the bed, a nurse next to me to ensure I didn’t slip, when I began to feel funny. Assuming it was a panic attack (which I hadn’t had for a while now) I told the nurse I needed something to calm me down and that I was struggling to breathe. Before I knew it another nurse was in the room, he’d been watching the monitors outside and my heart rate had spun out of control. As the two of them moved me back to the bed, I lost consciousness. I came round to find about 7 people in the room, attacking me from all sides, and the bagging mask on my face. Apparently I had passed out and my CO2 and jumped through the roof. Whilst they attempted to get an arterial line back in the doctor had bagged me, and as soon as she did I began to regain consciousness. I lay there, my eyes refocusing slowly and heard the doctor say “sorry I called you back, I thought we were going to have to shock her”. I glanced sideways to see the crash trolley primed next to me.
My mum had been called and arrived about 20 minutes later. Weirdly, in spite of what I (and everyone else) feared, this episode didn’t knock my confidence as much as it should have. The team investigated everything they possibly could, and several different specialists came to see me, but it was decided that this was probably (and hopefully) a one off weird reaction, and that it wouldn’t happen again. With this evaluation of events, I narrowly escaped returning to ICU for closer monitoring, and decided to try and continue moving forward as quickly as possible, to prove to them all that this was a mere blip in my recovery and I was actually still progressing nicely.
In spite of early hopes that I would be well enough to attend Laughter for Life, March 4th loomed and it became obvious I would not be up to it. As upset as I was (we had worked long and hard on this and I wanted to see the fruits of my labour, let alone meet Bill Bailey and Dara O’Briain!) I knew how lucky I was because at least the reason I was missing it was due to my newly instated working lungs. Adam’s sister came and sat with me for the whole evening, we watched Will and Grace and munched on a takeaway and had really quite a pleasant evening. After the show was over, Bill Bailey phoned me to let me know it had gone fantastically well and that it was one of the best charity gigs he had ever been involved in (due to still only being in the early stages of relearning to speak I managed not to squeal down the phone at him).
On the 5th March, it was decided that I had managed to spend enough time on oxygen alone to warrant a sleep study minus the bi-pap. I was slightly nervous but by now was enjoying the feeling of breathing unaided, even though it was still slightly hard work, and was much more confident in my new lung’s abilities. The following morning, the team strode into the room. “Well your numbers look fine, let’s get that trachi out shall we?” the doctor said, rolling up his sleeves. I immediately panicked at the idea of this new change in the amount of support I was receiving¸ but the SHO reminded me gently that they wouldn’t do anything they weren’t convinced I was ready for. So the neck collar and the fastenings were loosened, I was instructed “big cough”…and out it came. As I breathed in I could feel the air whistling through the hole in my neck (not particularly pleasant but not painful at all) but they stuck a plaster on, informing me that the hole would heal itself within a week or so. As we sat waiting for me to become accustomed to the lack of tube protruding from my throat, the doctor glanced at the monitor. “Your sats are good, 98%...ok let’s loose that oxygen shall we? And the NG tube whilst we’re at it.” The NG tube was removed, making me cough a little, and then my nasal specs were taken away from me.
I felt almost naked, that there was something essential missing, I suspect you would feel something similar if you went out without shoes on or something. I had been wearing oxygen full time for 2 years by then, and over night since 2003, so suddenly having no tubes at all felt incredibly weird. After about 5 minutes I tried to suggest that perhaps I did need it for a little longer and would they please give it back, but the doctor merely laughed and replied that I no longer needed it…my lungs were working. Once the team had left, I got off the bed and wandered slowly round the room. No tubing to hold onto and to watch that I wasn’t pulling too far or to tangle round the bed, just freedom to move. That evening my sisters arrived and saw me tubless for the first time in years. They instantly clambered on the bed with me, able to get close to me without wires and oxygen getting in the way.
The following Thursday marked the birthday of a rather special mummy, and all she wanted was for the whole family to be together. We discussed the idea of all getting a takeaway and squeezing into my room, but it was clear this would be a)near impossible and b)require great skill as people would have to stand up balancing their plate and another dish as there was virtually no surface space either. As we talked through the options, I toyed with the idea of leaving the hospital. I was terrified at the thought, I hadn’t yet left the hospital grounds, and the idea of being further than arms reach from a nurse was not a comfortable thought. However my mummy’s special day overrode my fears, and I cautiously agreed to accompany them all to a restaurant. We took two cars, incase I needed to return quickly, and sped off to a small Indian restaurant in the village. As we drove out of the gates my stomach flipped over. I was setting off with no oxygen, away from medical intervention, to have my very first independent experience with my new lungs. I was still lying down for the majority of the time so sitting up in the restaurant was hard work. The meal was lovely, my mother was beaming from ear to ear, and we all toasted to my first attempt at freedom.
The next week, the team strode in as usual to ask their usual questions and perform their usual tests. A and I sat there half listening, half continuing to chat when the main consultant said “well things are looking really good. Best possible outcome judging on today; discharge next week.” Stunned I muttered something along the lines of thank you, and they swept out the room closing the door behind them and leaving A and I to say in unison “oh my GOD!”. I phoned my mother immediately who became somewhat hysterical and even louder than usual. It had gone from looking like I would be in for months and months to suddenly talking about me being at home, full time, with my new lungs.
On Friday 16th March, my mother arrived at Harefield and entered my room for the last time. Two HCA’s had been in all morning, painstakingly removing my cards one by one from the walls, and helping me gather my mess into relatively organized piles to transport back home. We attempted to act as though this were a normal visit, both of us secretly afraid to say anything about home incase someone came in and suddenly told us there had been a change of plans. As my mother took the final bags to the car, I began my final slow amble down the corridor, hugging various nurses and promising to take good care of myself. I pushed the door open and the cool breeze hit me hard as I stepped outside. The car pulled up and I slowly eased myself in and fastened my belt. As we started moving forward my mum looked at me, grinning manically. We drove through the gates, shrieking, a cross between laughter and tears; the initial part of this journey was over, and life with my new lungs and a wealth of opportunities, experiences, triumphs and challenges was about to begin.