Hope goes all over the place

Latest blog from: hopegoesupanddown.blogs... - a record of the hope, terror and unknown future faced when the one you love most in the world suffers a brain injury.

So, to catch you up on all that has happened since my last post. If you remember, Jake had just had his shunt revision operation following a shockingly bad first hand experience of the ineffective communication and organisation rife some parts of the NHS.

Well, I'm afraid things didn't improve.

At no point after his operation did a Dr of any kind come to tell us how it had gone and what we should expect. Jake was finally moved to a medical ward in to a bed with someone elses name and dietary requirements above it until I arrived and pointed it out. He was then held captive on this ward, where no one had read his notes (again) for three days. This meant that, despite me telling them every time I came in and the sign I put above his bed spelling it out in capitals, they kept calling him by the wrong name that no one ever calls him (it's complicated but Jake is actually Jason). They alarmed his bed to stop him from getting up and walking about and then gave him anti-coagulant injections in his stomach every day because he was immobile; madness. And all this because they were fixed on sending him back to 'rehab' rather than home as he was 'still very confused, aphasic and unsteady'...you know, those chronic conditions that are normal for Jake which they would have known if they'd just READ THE BLOODY NOTES.

I called the brain injury registrar Dr King (who is lovely) first thing on Monday morning and agreed with her that there was no reason for Jake to come back to hospital and, so long as she could get the OK from the registrar , Jake could be discharged straight home with me, not least because he was going insane being trapped in a bed all day. This would have been great if the registrar could be bothered to return Dr King's repeated calls. He couldn't.

As the advocate of someone like Jake you sometimes have to make yourself a massive pain in the arse and this was one of those times. I arrived at the hospital at 3pm and announced, in my most friendly but definitely not to be trifled with voice, that I would need to see the registrar immediately as, having had the OK from Jake's Consultant, I was planning on taking him home that afternoon and I would really rather prefer to do it with their blessing. Ha ha ha, apparently that's the magic phrase to make the Dr appear. Not in person of course; like the undead, Drs cannot be seen in daylight and can only communicate through their earthly underlings (the nursing staff). Anyway, approval was gained and there was much running around getting discharge papers printed and signed. The only wrinkle being the physio who wasn't initially happy to OK the discharge as Jake was still 'very unsteady and drifting to the right'; good work Sherlock, this is because he has ataxia and right hand side neglect which you'd have know if you'd just READ THE BLOODY NOTES.

So, finally sprung and safely back with his much missed furry idiots, Jake carried on, oblivious that we were all holding our breath waiting to see what impact the shunt revision would have.

The road to recovery in brain injury land is never a smooth one and the next couple weeks saw Jake battle a stomach bug, infected wound site, ingrown toenail removal, a resurgence of the constant vomiting issue and the reality of what happened 20 months ago finally dawning on him. Worst of all, after 8 months seizure free, a full tonic clonic seizure last Tuesday.

And yet, in the midst of all this discomfort, illness, confusion and fear, my extraordinary husband has retained his sense of humour and, more excitingly, regained a level of recovery not seen since Christmas. It seems the shunt has been failing for some time! On top of that there are signs of even further improvements in his language and understanding, mobility and independence. Bloody brilliant.

Not wanting to take the wind out of anyone's sails, but it's important to manage expectations and it is worth pointing out that, although amazing, all these things are relative. Our Jake is still a very damaged man. He is profoundly dyspraxic, aphasic, ataxic and dysphagic as well as suffering from memory and executive functioning issues. That said, he never gives up and has already exceeded the expectations of every medical and rehab professional he has encountered and life is so much better than we were led to believe it would be.

So hope continues to lead us on it's merry dance; it's a good job we like dancing...ish.

5 Replies

  • Once more unto the breach dear Charlie, once more..................It doesn't bear thinking about , what happens to people like Jake without the intervention of people like you. Good work, once again, m'dear.

    It's so heartening to hear there are further signs of improvement and thank you for the update.

    Well done to you both. Sincere best wishes xx

  • Talk about......Fight the good fight......When the going gets tough the tough get going.....

    It never rains but it pours.......Life is a roller coaster....

    I could go on forever....remember Charlie and Jake the only way is up

    Keep your chin up, take care you two :)

  • I feel so much for you Charlie, we are continuously struggling here in East Yorkshire, for everything. I can relate so much to your descriptions of your hospital, the hospital in Hull may have saved Steve's life, but since then, 8 months ago, it feels like no one cares at all what now happens to him.

    I am not the sort of person to go shouting and screaming, but my God it makes you feel like that.

    Every Monday morning I start the week trying to think positive, telling myself something will happen this week, an appointment will arrive from the neuro psychologist, from the neuro dept. with a date for his cranioplasty, from the neuro doctor re. his seizures, from the specialist who is dealing with his hernia, or anyone who cares!! But by Friday I know the depression will set back in, and no contact will arrive.

    This weekend we have spent the entire two days within the walls of our home, there has been lots of crying, we try so hard to be positive and upbeat, but what with the weather making it more difficult to get out and about and Steve's desperate fatigue which makes the smallest effort so tiring, we have not ventured out.

    Keep fighting Charlie, its the only thing we have left isn't it. Very best wishes to you both x

  • I empathise with you sooooooo much. I too, have become a right "pain in the a..." With many organizations who do not, or even want to, UNDERSTAND!!!!!! As I frequently say, I do not want sympathy I just want you to UNDERSTAND!!!! From the doctor who tells me casually "tell your son to make an appointment if he has a problem with his seizures or anxieties" ARGGGGGGGGGGHHHH for the 10th time - he is not aware he is having seizures and forgets he has phoned me, for hours, almost on the hour, with a problem he has fixated on. Stock answer "He has the capacity" - The Mental Health Act has a lot to answer for. To the housing organization who would have been no help at all without my quoting - literally - their responsibilities as a Social ,according to the rules and regulations.

    Mrs PopuIar, I am NOT!!! I fear for my son when I am no longer in a position to help him.

  • Should have read "As a Social Landlord"- my mind works more quickly than my fingers!!!

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