Monday, 30 April 2012

The school of life

Be thankful I didn't write this post on Friday; it would have been very whiney. Actually, be grateful I didn't write it Saturday either as it would have been very winey (and cidery). As for Sunday, well don't start me...

I know, I know, get on with the update on Friday's meeting.

We all crammed together in the stuffy therapy room; Sister in Law, Pippa the Case Manager and me from Team Korving and the clinicians and therapists from the Boot Camp team. Everyone seemed very jolly and, as you'll know from last week's post, Team Korving was feeling pretty positive. Right up until the Speech and Language Therapist said "Jake has pretty much every SALT problem possible". From that point on it got worse; despite undoubtedly making progress, Jake's issues are so complex that the intensive, fast stream rehab environment of Boot Camp is often creating more problems for our boy than opportunities.

This means facing the one thing we had been hoping to avoid; slow stream rehab. Now at this point I find myself having a little chat with me (yes, I'm talking to myself). Why do the words 'slow stream rehab' fill me with such dread? I think it's because it is further evidence that Jake is not going to make a miraculous recovery; a fact that my head had already come to terms with, but my heart has been fighting. It also means that at the 6 month stage Jake still faces a very, very long and uncertain rehab journey ahead and our future will continue to be frozen in stasis.

On the other hand, what this means is that Jake will be in an environment which feels less like an acute hospital and more like a home, with less structure, less uniforms and less pressure. His rehab will be 'nurse led' rather than 'therapy led', which essentially means Jake will develop through everyday routine and environmental cues, rather than short, highly structured sessions. He will still be supported by Speech and Language, Occupational and Physio therapists, but at a pace that is better suited to Jake's capability. More school of life than Boot Camp.

Over the next few weeks the Boot Camp team will adapt the way they work with Jake to reflect this nurse led approach and maximise the time they have left with him, focussing this time on helping him to nail the stuff he has started to develop but is still doing inconsistently, rather than introducing any more challenge. For example, they are going to start working with him in the hydrotherapy pool and on an exercise bike to help him to finally achieve a stand (I will ball like a baby when this happens of course). Jake always loved cycling and swimming so this is fabulous.

During this time they will also be focussed on really getting to grips with what is driving Jake's challenges and progress (i.e. how much is won't versus can't), so that when they apply for the funding for his next move they are recommending the right unit with the right emphasis. This means that in the next few weeks I will learn whether we will be staying in Dorset...or moving to Devon!!! Never a dull day in rehab land.

Reading that back it feels much more like good news than it did on Friday, so I am glad I didn't burden you with my self pity then! Instead I had a lovely weekend with Lisa, Bev and Fiona, which is noteworthy for the 5 hour hike, lovely food, free flowing alcohol and a deeply embarrassing visit to hospital for me on the Sunday. Ha - that's piqued your interest hasn't it...I'm not telling, so there!

Today is my last day working before my sabbatical begins, so you can expect more frequent updates. I'll let you decide if that’s a good thing or not.

1 comment:

  1. I can see why it might not seem like good news at first. Hopes being dashed is always so painful. But on the other hand it sounds like they are really working hard to understand what is really best for Jake to optimise his rehab experience.

    Thinking of you. You are doing amazingly with all of this. Hats off to you Mrs K.