Sunday, 23 June 2013

Hope goes all over the place

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. If you possibly can, avoid Southampton Hospital. Seriously.

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 Poole 'rehab' rather than home as he was 'still very confused, aphasic and unsteady' 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 Poole 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 Poole hospital and, so long as she could get the OK from the registrar at Southampton, 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 at Southampton 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 at Southampton 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 from Southampton 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.


  1. Sorry to hear about issues with Southampton - I had similar when my daughter was in. She went in with shunt revision. She got a pressure sore in one of the neuro wards - not NICU. ANd they took 7 days to get a replacement trachy from stores to her ward!! I have received a semi apology from them.

  2. Sorry I'm weighing in on this so late, Mrs. K! I'm playing a bit of catch up here. What a roller coaster! Hope does definitely go up and down, huh? I am thrilled to read that Jake is making such gains! As you said, "bloody brilliant" indeed! :)