Month 4 - Reintegration

José’s journey so far can be classified in to the following chapters: month one was Intensive Care, month two was Weaning, month three Rehabilitation and month four Reintegration.  Hopefully month five will be Discharge.

In this fourth month of treatment the frustrations have been technological rather than physical.  The FES (Functional Electrical Stimulation) bike mentioned in my last email broke before José got his second go and the chin control on the wheelchair keeps collapsing, causing José to crash into walls or career into parked wheelchairs.

When it comes to wheelchairs José was fortunate enough to be lent by the manufacturers a chair that can be controlled by his head for a week-long trial.  It’s incredible to watch as he appears to move by the power of thought alone! We weren’t sure it would work because of José’s limited head movement (a result on the scaffolding holding his neck in place) but it is very responsive.  When it comes to discharge Greenwich Wheelchair services will initially provide José with a manual chair, but they have now agreed to order an electric wheelchair with the head system.  The persuasive argument when they met José was his insistence that he wanted to be able to talk and walk at the same time – something a mouth or chin controlled chair will not allow.

The FES bike was eventually fixed last week and José got on it for two days in a row.  Remember this uses his own muscles to power a cycle machine, the muscles are stimulated by electrical impulses applied directly via pads on the legs imitating messages from the brain.  On Day 1 he had it set to resistance level 1, the following day he had it set to level 2 and cycled the equivalent of 5 miles in just over 20 mins.  He had to ask the physio to open a window as he began to work up a sweat after four months of being effectively bed-bound.  On the phone to me afterwards he moaned about how slow he was! 
As this is the only physical exercise José can partake in and the rarity of the equipment means there are none near our home, his physio is attempting to make a case for the NHS to provide a bike for his own use.  Apparently 18 such cases have previously been approved for people with injuries similar to José so we can but keep our fingers crossed.  I have no doubt he will be on it every day working to beat his PB.

Our ‘dates’ have continued slowly but steadily, with a second lunch (and a glass of really bad bubbles) in a nearby pub and then lunch at home accompanied by four carers who also needed to be fed.  The purpose of the trip home was to see how much of our house José will be able to access.  With the use of a portable ramp, and help from a neighbour to quickly remove a concrete step, he was able to come in through the back door into the conservatory.  Then a second positioning of the ramp got him in to the rear reception room.  We were delighted when the nurse then carried on through the internal doors and with a bit of manoeuvring, bumping and tilting got him in to the front reception room.  Unfortunately José does not have the core strength to use a stair-lift and our rooms are not large enough to accommodate the size lift his wheelchair would require – but he can have access to all the downstairs rooms which is brilliant.  Equipment has started arriving and I have been able to set one room up as a bedroom with hospital bed and hoist etc; whilst the other is used as a sitting room / computer room where José will be expecting to receive you all.  The conservatory will hopefully become our dining room.  My Dad has spent a week digging up the garden to replace the first series of steps with a ramp and small patio so that should we get a sunny day José can be outside with Bradley.  We have managed to find a buyer for our house, but as yet no suitable bungalow has become available.

Our fourth date was 24-hours with a nurse in a purpose built flat within the hospital grounds.  Bradley was allowed to stay with us, which obviously added to the complications but was a great indication of what life will be like post discharge.  It rained for the first afternoon/evening so we didn’t get our planned walk but we did got to the supermarket for lunch in the cafe and to choose our own dinner (yes, it involved a bottle of wine).
The following day was better weather and we escaped from the hospital to a country park across the road and out to a London Viewpoint where you can see from Heathrow to Alexandra Palace with everything south in between.  The path was a new, solid but stony affair which in the head controlled wheelchair could only be negotiated at 0.75miles an hour – a very slow walk, but an immense sense of freedom!  José his own back when we got back to the road, changing to top speed and making even Bradley run to keep up.  I expect one-day we will be researching all-terrain high suspension wheelchairs.

This week José was taken to the swimming pool with his physiotherapist, and I was fortunate enough to get the time off work to join them.  Stanmore has a warmer than average pool (31˚c) with a wheelchair ramp into it.  It took a while for him to relax, unsurprisingly, as he could only feel the water around his head and had a very real fear of drowning.  However, with two Noodles (or strips of coloured pipe insulation) he was kept afloat whilst we swayed him around in the water and stretched out his spasms.  He was also able to start working his shoulder muscles and get a little arm movement as a result, without the resistance of gravity.  Our local pool has a wheelchair hoist and a spa pool at 32˚c so we hope to repeat the experience.
Following our swim we escaped to the poolside cafe for a coffee and then ordered in a Chinese takeaway – replacing far more calories than we used.

Gosh, I’ve rambled on this month – I hope you stopped reading when you got bored.  I promise not to email you every time we go to the supermarket or get a take away!

I shall leave you with his parting comment from the phone last night; “I did 45minutes standing on the Tilt Table today, it felt good to look people in the eye”.

Massive thanks to you all for all continued support, I’m sorry if I don’t reply to everyone who responds but I do pass all your comments on to José and your support really means alot.