Friday, 31 May 2013

The fear

You know that moment when you've been trying to prise the lid off something and suddenly it pops off and the contents go everywhere? Well, that's what happened on Wednesday morning.

After literally weeks of banging on that things were 'not quite right' and sending countless increasingly 'direct' emails, we got a call from Jake's consultant at 9am to say "I've reviewed the latest CT scan with a Consultant Neuro Surgeon, this needs to be dealt with today, there is an ambulance on the way". Gulp.

First thought; good. Second thought; oh God, here we go again. Third thought; how the hell am I going to explain this to Jake through the fog of aphasia and hydrocephalus? Fourth thought; I should get out of this towel before the ambulance arrives!

Thankfully the ever calm and generally amazing Keeley (Jake's primary carer) was there and took us both in hand with her usual air of quiet competence and we arrived at the emergency admissions ward at Poole Hospital at 10:00am. Jake was now 'nil by mouth' and the registrar assured us that we would soon be transferred to Southampton Hospital for emergency Neuro surgery and we were looking at this all happening "in hours rather than days". All very scary...all very exciting. Getting the shunt fixed meant getting Jake back on track.

Another CT scan was quickly done and sent over to Southampton and then we waited...until 6pm when the ambulance finally arrived. On arrival we were admitted to the Neuro transitional unit and waited for Jake to be admitted and assessed.

At this point it is important to stress that I think the NHS is utterly amazing. The support, care, expertise, investment and understanding we have received over the last 19 months has been truly amazing.

Southampton, however, did not fill me with confidence. It took 90 minutes for someone to come and check on Jake who, as sister in law said, is an emergency admission and could have been dead for all they knew. 

9pm we were finally seen by the registrar who was a very pleasant chap who seemed to know his stuff, which was all very comforting for the first ten minutes, up to the point when he said "has he had a brain injury before?", quickly followed by "what's his name?". He knew NOTHING about Jake's severe brain injury and clearly thought he was dealing with a straight forward case of organic hydrocephalus. Having put him right and filled him in on the last 19 months SIL and I did our best not to communicate our belief that he was as capable as a mummified slug and off he went to read the notes...yes, that's right, he hadn't read the notes.

Back he trotted with the news that Jake was now "first on tomorrow's emergency list" and Jake was finally allowed to eat and drink something at 9:45pm after 13 hours nil by mouth.

Meeting for breakfast in the hotel the next morning SIL and I were feeling positive that Jake would soon be in theatre and all would be well. I called the ward at 8:30am to see if he'd gone down yet (having learnt the hard way, SIL and I do our best to ignore the whole 'sitting outside of a theatre watching the minutes crawl by' scenario and had planned to get there after he had been moved to recovery). You can imagine my confusion when I was told that 'he's not on the emergency list anymore, they'll get to him today if they have time". 

Hang on, how can he be rushed in as an emergency case with the consultant Neuro surgeon insisting it needed to be dealt with immediately and then suddenly no longer be that urgent despite worsening symptoms? This sounded VERY wrong to me, so out came the warrior wife armour and SIL and I planned our strategy for 'helping them to reconsider'. Cutting a long, distressing and often fraught story short, we got the consultants to communicate and we were back on track for surgery on Thursday.

Of course, during this time a very confused and frightened Jake was lying in a strange ward, not allowed to eat or drink for two days and not really understanding why he was here. He was amazing and coped unbelievably well, of course. 

Finally, at 6pm yesterday, I held my Jake's hand as the anaesthetist sent him off to sleep and he was wheeled off into theatre.  SIL and I then had the joy of what is absolutely the worst bit, the waiting. Much coffee and tea is consumed and much banal small talk is half heartedly made.

At 7:45pm he was taken to recovery and at 8:45pm we got to go and see him. He was very groggy and uncomfortable but seemed to know us, so we reluctantly headed back to the hotel to eat...and drink. 

Emboldened by too much wine I broke my own rule and called the ward at 10pm'just to check'. What I hadn't expected to hear was "he's fine, sitting up in bed having a cup of coffee, would you like to speak to him?". Err...hell yes! 

Gladiator Jake had done it again "is that my wife?...hello wife" said he, "bloody hell" said I!

So this morning we start again with hope going up and hopefully I'll be able to get he chorus of Lilly Allen's 'The Fear' out of my brain and replace it with something a little more appropriate, any suggestions?

Friday, 24 May 2013

Still here

I realise that it has been over 3 weeks since my last blog post.

Many of you have contacted me recently to check I'm OK, so I'm sorry if I've been a bit under the radar and thank you for all being so lovely.

When I started to write this blog its main purpose was to enable me to keep people informed at a time when I was too overwhelmed to talk.  Over time it became a welcome outlet for the dizzying range of emotions and challenges that having a brain injured husband brings.

Recently it has started to feel as though it doesn't belong to me anymore, but rather is a service I provide to others.  I get that this is inevitable to a degree, but I got to the stage that I felt that I HAD to write it, rather than wanting to; it became a chore.

Add to that the roller coaster of events recently, both good and bad and I'm afraid I withdrew, battened down the hatches and waited to feel ready to write again.

I'm going to give it a go today and I suppose the best thing I can do in this blog is to update you on the last few weeks.

It all started to go awry on the 1st May with the news that a major London newspaper had picked up Jake's story from court papers and were going to run it the next day; did we want to comment?  This is absolutely the last thing we wanted and our solicitor stepped in and we hoped that it would run and then go away.  Which largely it has, with the minor blip of a bloody cheeky journalist wandering into our back garden to see if I wanted to comment as 'it's all in the public domain now Mrs K'.  Snotty cow, off she went, with a flea in her ear!

That weekend we went to stay with friends where there was some much needed silliness.  It also saw us take Jake to a charity in Bushy Park that provides a wide range of companion bikes and trikes to see what would happen.  I went without expectation, as the nature of Jake's accident and his lack of confidence meant that we didn't know how he would react.  Well, he surprised us all by hopping on a trike and peddling off, albeit very ungainly and slowly.  Bloody brilliant!  You'll never guess what we're getting him for his Birthday next week?

There have also been some concerns about Jake's health which has seen trips to A&E, finding him dazed, confused and bruised on the bathroom floor in the middle of the night and the regression of both physical and cognitive abilities that culminated in a CT scan and other tests.  The upshot is that his VP shunt has an intermittent fault which means that he is experiencing occasional recurrence of the hydrocephalus that kept him in a minimally conscious state for the first few months of his recovery.  This will require the replacement of some or all of the shunt and although I am glad we have an answer and a plan, I am gutted that he will need another surgical procedure.

Other notable events have included a bout of man flu (Jake's not mine!) and a failed attempt to take Jake off the anti-emetics.  As a friend who saw the results first hand commented, it was like "a Roman banquet at half time".  Life in brain injury land is certainly never boring!

That said, there is much to look forward to, with contracts due to exchange on the new Korving Towers next week and Jake's Birthday BBQ on Sunday; even the weather forecast seems to be on-side.

That's it for now; I don't know when I will blog again, but I'm bound to at some point, so bear with me!