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May 16, 2012 / angelavbolton

Robert’s first two months in hospital

Our Wedding Day ~ April 18th 2008 ~ the happiest day of my life

When something like this happens in a family it’s very difficult to know where to look for help, especially when your loved one is very ill and, for a while, all that’s important is that they are alive.

Fear is a constant in these situations – every cough or rise in temperature can leave you feeling terrified all over again. What if? Particularly when it’s unclear what you’re dealing with, and the unknowing and uncertainty contribute to the dread of change for the worse.

Robert was in Intensive Care for two or three weeks where he had drains coming out of his lungs and his back, a naso-gastric tube to drain off stomach fluids, a tube going into his throat (his tracheostomy) as well as a food line into his stomach and several canulas to administer medications. This is a terrifying sight, to see the person you love all wired up.

It was while he was in ICU that we learned how severe the brain damage was, and although an MRI scan can show a visual of what’s happened, it is still an area around which there are variables, and medics find it hard to foretell in what way a patient will heal. One really brutal day I cycled in for the afternoon visit (I don’t drive). I’d just arrived beside his bed when a young woman joined me. She said who she was and that Robert’s brain damage was ‘quite severe’ and we should ‘prepare ourselves’ for ‘the worst’ in that regard . She went on in this vein for a while. I could feel sweat tickling my scalp from my cycling exertions while she talked, and I grew cold and began shivering. Crying, I stroked Robert’s head and looked at him sleeping, not believing that this girl could deliver heart-breaking news in such a casual way.

One hour later, before I got on my bike to cycle home I had to phone my step-son Jason to get calmed down and hear a voice of reason. Of course, he did calm me down and I was able to get home without ending up under a bus. Later I got the feeling that this girl was practising on me – the ‘delivery of bad news’ scene – and I deeply resented it. That kind of prognosis should be given in the proper environment and not to just one family member. I very much needed someone else there right then.

While Robert was in ICU we stuck very rigidly to the visiting times and visitor numbers for several reasons: we didn’t want to tire him out with our fussing, the staff need that space to do their jobs, and the ward requires cleaning, etc. We know those rules are there for a reason. Another good point about sticking to visiting hours is knowing when there’s people there…

On one occasion, not knowing that Robert had two visitors already, I rang the bell to be admitted into ICU. The voice on the intercom said ‘someone will be out to you now’ and I nearly fainted with fright, thinking something had happened and they were coming out to tell me. I’ve never had my knees go weak before but they definitely wobbled when I saw, with relief, my sister-in-law Zita leaving ICU smiling at me. I misunderstood what the voice meant by ‘someone coming out’, so I made everyone promise to tell me when they were going in, just text me even, to save another near heart-attack.

The Move to Bennetts Ward

It was good news when Robert was moved to Bennetts Ward where we had more leeway with visiting times. While this was great, we still didn’t know if we could do anything practical to help him. Afraid of tiring or frightening him, and not knowing how aware he was of our presence, sometimes we’d just sit looking at him. It took quite a bit of time and research to find the small ways in which we could contribute to his recovery.

He was still very sick with recurring chest infections, high temperatures and a seizure early one Sunday morning. This turned out to be because of a temperature  spike, not a brain bleed or any other more serious cause. However, we didn’t know that until much later that day. One of the doctors said ‘everyone’s entitled to one seizure’. Apparently, for a person with an Acquired Brain Injury (ABI), this has a 1 in 2 chance of happening.

With the help of the physiotherapist and the occupational therapist, we took on routines of passive physiotherapy: straightening and bending Robert’s legs, arms, wrists, fingers and thumbs. The leg physio is hard for me when he’s in the bed so it was only when he was sitting out that I could do that (I’m a bit small height-wise), but we all worked – and still do – on his arms, hands and fingers.

And then Christmas was upon us.

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