Nick is now in Stoke Mandeville Hospital

It’s been another rollercoaster week so far. Nick is progressing faster than I can write to keep up. Still very small bits, most of the time…a touch more control of his fingers, eyes a little easier… then he drops a big one in my lap, just to keep me on my toes.

Nick’s speech… or lack of it… has been one of his major concerns… he hasn’t used the alphabet board for several days now. His speech is still thick and often almost impossible to catch due to the paralysis… but if he takes his time he gets through. Some things are perfectly clear though and daily he nibbles away at the limitations. A speech therapist might help, of course…but one was not forthcoming till yesterday morning.

He has railed against the imposed indignities of his personal care… as he has full feeling and shouldn’t have a problem there… but it is such hassle for the nurses to hoist him in and out of bed. He was told he’ll keep this arrangement till he can stand, transfer from bed to chair and/or walk.

So he did. ALL of them. (With me bouncing around like a demented hobbit in the background desperately trying to stay silent…)

The physio steadied him as he swung onto the edge of the bed… then he got to his feet using a stand on a turntable that lets him lower himself into a chair. That was unbelievable to see… so imagine me flabbergasted when, rather than use the stand, he steadied himself on a couple of nurses and not only stood, but walked the three steps back to his bed and got back in!

Needless to say, the catheter is finally coming out this morning and arrangements more dignified being put in place.

The physiotherapist here at Stoke Mandeville is excellent. Russell, however, is learning to be careful round Nick… he suggested Nick try and use the weak, semi-paralysed right arm to punch him on the jaw. Nick cocked an eyebrow… and got him twice, squarely.

On the down side we have a lot of tears as the frustration sets in. Especially as we are right in the middle of funding battles… the local health authority want to palm Nick off with a lesser rehab centre closer to here, rather than the state of the art place he has been offered at the OCE. Should the quality of care be governed by regional budgets when we operate a National Health Service? Don’t think so, somehow… so my sleeves are rolled up and I’ve sharpened the pen… I just need to know where to aim it most effectively.

We also have much laughter though!

On a personal note, I finally went in hospital on Monday for one of the procedures I’d been putting off. They found more dodgy polyps, couldn’t remove them so I’m booked back in hospital for the 16th as they now need to look further and rid me of what they have found, and what they apparently expect to find.

Alex has tonsillitis, and is suffering the highs and lows at a deep level. Kevin is struggling with everything at present… it’s a lot to deal with and he feels he’s carrying much of the weight on his shoulders… and they ache. His joints have all flared up now too and he’s in pain and not sleeping very well. I’m snowed under with paperwork with all this and so very tired all the time, yet sleeping is still curtailed by nightmares. Ryan is coping with his friend’s pain as her father has just been diagnosed with cancer and Lee is caring for his very pregnant partner who just lost her grandfather. Add to that the financial struggle to keep the family afloat, keep visiting Nick daily with me off work sick and buy him the things he needs too, and we’re having a bit of a ride on that rollercoaster!

Oh well… at least we’re not bored!