Thank you for your kind responses following my babble on Tuesday, it is a wonderful motivator to keep pushing and campaigning knowing there are people behind you. My appointment at Harefield today went well, although one of my blood results was a bit wonky meaning we have to trek back up there tomorrow morning for repeat tests. Still it is gorgeous and sunny, and it is a pretty drive, and sunshine can’t fail to make you smile. Anyway! Let me finish the slight cliff-hanger I left you on…
Friday 19th January, my wonderful cheering squad crept cautiously into Intensive care. I was still there, still hanging on, and even better than that showing the first sign in days that I might be getting on top of things – my temperature and heart rate had both dropped. Due to me being septic, the staff were extremely cautious about giving my family false hope and would only confirm that they were cautiously optimistic but that I had an awful lot of fighting to do. I was started on haemoglobin and blood transfusions to help me fight and over the next 24 hours my readings continued to stabilize.
By Saturday lunchtime my family were feeling a lot more optimistic and decided to go out for a celebratory meal. Clearly I was most disgruntled at not receiving an invite because just as their gorgeous hot dishes arrived, my mother received a phone call saying they needed to return to Harefield straight away. Apparently not satisfied with all the medical chaos I had displayed so far, I had decided to embark on a new tact and developed a blood clot in my leg. A specialist surgeon was being rushed over from Watford and my mum got back to be greeted by the consent forms for an operation that if it didn’t succeed, would result in the amputation of my left leg. Kind of me to create a new type of worry for them I suppose, rather than play the same “I have dodgey lungs” card over and over again.
The operation involved a little umberella type mechanism being inserted into the vein (lack of medical knowledge showing through here) and luckily was a success. As one surgeon so amusingly put it “we would be reluctant to remove the leg as it would hamper her recovery somewhat”. Despite this small setback, I continued to show signs of improvement, with the infection markers in my blood dropping daily. It was discovered around now that I wasn’t absorbing properly, which meant I wasn’t getting the nutrients so vital to my recovery. I was also still being sick when they gave me the IV I was allergic to which I suspect wasn’t helping matters very much.
That weekend I got my first visit from Richard (as in and Judy) although I was well sedated and unaware of the excitement his presence on the ward caused. As my progress continued on it’s very slow but upwards track, my family started to read out some of the many cards that had already winged their way in my direction. I was sedated but would respond by smiling or moving slightly.
I had by this stage developed something called organising pneumonia (wonderful name, it made me smile every time I heard it) where repeated high temperatures and infection causes the body to get a bit cross and it starts depositing debris in the lungs which consolidates and shows up as scary white patches on the X-ray. This was however treatable and I was immediately started on high dose steroids to prevent permanent scarring.
On Tuesday 23rd January, they inserted a tracheotomy and my sedation was switched off. One of my first attempts at communication was to ask for the Vac pump - which continuously squeezed and sucked round my ribcage to extract infection from the wound – to be taken off (I did not succeed and the vac pump stayed in place for many weeks to come). Over the next few days I continued to come round more fully and became more communicative with it. The surgeons came round to see how I was doing and I politely informed them they had one week in order to get me off the trachy. Slightly stumped by this dictation of management the main surgeon attempted to gently explain that it may take a little longer than 7 days.
As I became increasingly more awake, the gradual realisation of exactly how ill I had just been began to sink in. I found myself unable to move; I couldn’t lift my own head, pull my legs up or raise my arm, as I had lost so much muscle strength. I couldn’t talk or eat due to the tracheotomy and ventilator and discovering that I was no longer in control of any of my body was a frightening experience. I asked my mum and A how close I had come to dying, but they brushed over it slightly, concerned for my mental welfare at this delicate stage. Whilst the initial danger zone I had fallen into was now coming to an end, newly awake and aware of my surroundings, the journey was only just beginning.
6 days ago