The Great (But Very Slow) Escape


The adult ICU at the Royal Brompton hospital is a kind of ICU on steroids. I was in a room that, I guess, was about twenty feet square. The air in the room is changed regularly and kept at a slightly higher pressure than the air outside the room. I had a highly-trained nurse with me 24 hours a day, and I was never left alone, not even for a minute. If the nurse wanted to leave the room, they stood at the door and tried to snare a passing colleague who would cover for them as they dashed to the loo or fetched medication or equipment. It was both reassuring and a little claustrophobic.

When I came to after they had fitted me with the tracheotomy, doctors wanted to ascertain my physical state. As a general rule-of-thumb, with Muscular Dystrophy, if you don’t use it, you lose it. Well, you lose it anyway, but if muscles aren’t used regularly, they tend to weaken more rapidly. I had been lying immobile for weeks by now, and there were concerns that I might have lost some core muscle strength, maybe even enough to make sitting up difficult, if not impossible.

So, the doctors were keen to get me sitting up in my wheelchair as soon as they thought it was safe to do so. Wisely they waited until Polly was around before trying. Transferring to the wheelchair at home had been relatively easy; I had two trained carers and a ceiling hoist. Here we had a mobile hoist, a new tracheotomy, countless wires and a cannula inserted into my neck. It was decided that two physiotherapists would take responsibility, aided by two nurses, and with a doctor standing by. Even with Polly there to help and give guidance, it still took about half an hour.

Once I was seated in my wheelchair, I found I could still balance, albeit a little precariously. I also had my voice back. (This event took place before the Compass Team brought me the stand and precious button mouse – see Given a Voice.) That day, my one-to-one nurse was a particularly lovely woman (all the nurses were lovely, but there are degrees of loveliness). She had a slightly more gung-ho attitude towards my care than some of her colleagues. It was she who had first mooted the notion of transferring to the chair, mere hours after the tracheotomy procedure. Delighted that I could now communicate with her, she asked me if I wanted to do anything, now I was up. I told her I wanted to get out of my room. With a grin, she hailed a passing nurse and asked them to keep an eye on me while she went in search of a doctor with enough seniority to authorise such an unorthodox venture. A few minutes later, she arrived back with two doctors in tow.

To my surprise, the doctors (after some whispered consultation) thought this was a good idea. The request may have been simple; the application of it was anything but. Apparently, going for a wander straight after being fitted with a tracheotomy, and directly from high-level ICU, is not standard practice. No one was quite sure what the protocols were. As a result, we took everything. When I finally departed my room, I was trailed by an entourage of two nurses, an anaesthetist, a physiotherapist, two trolleys carrying a ventilator, a cough assist machine, a portable suction machine, oxygen, and a monitor to monitor my sats and heartbeat. Polly and a senior doctor wearing a huge red backpack stuffed full of emergency bits-and-bobs led the way.

As we moved into the corridor, we could see nurses peering through windows or standing in doorways with faces registering various degrees of amusement, bewilderment or plain surprise. “We’re going out for a walk”, my nurse told them, as if this was the most normal thing in the world. When we arrived at the lifts, and one stopped at our floor, the doors slid open to reveal that it was packed with people. “Everybody out,” my nurse commanded, and, sure enough, the passengers meekly filed out, and my entourage filed in. “I’m taking her with me next time I go shopping in John Lewis,” Polly whispered in my ear.

We went on a strangely meandering route through the hospital to the main entrance where, for a few chilly seconds, I breathed, via the ventilator, what passes for fresh London air. Then we meandered our way back to ICU. Much later, Polly explained the circuitous route we’d taken. She had given strict instructions to avoid all coffee shops, fearing I would ‘kick-off’ and demand a triple-shot espresso, having been caffeine-deprived for weeks by then.

My brief trip around the hospital made me feel as if I had taken a significant step on the path to going home. I hadn’t needed any of the mobile ICU that had trailed behind me, and at no point had I felt that I might. It gave me a boost of confidence and I set my sight on the next step; getting out of my sterile ICU room and across the road to Victoria ward. Surely, I felt, since I was already up and about, it should only be a few days. It wasn’t – it took several long weeks.

And, though I didn’t know it at the time, my assumption that I would eventually be going home, was being seriously questioned.

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  1. Helena on 27/02/2020 at 4:34 am

    To my wonderful brother, you inspire me every day. I love you. Helena

  2. Cheryl Jenkinson on 28/02/2020 at 10:58 pm

    I love reading this! You probably don’t remember me but I worked for a bit doing admin for Rob Frost and was in David Cooper’s Easter People Band! I spend quite a bit of time in and out of hospital appointments/admissions with my little boy so I know about the feeling of escaping the room!! Though it’s slightly less complicated for us! Keep on blogging and loving life!! 😊

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