Will we, won't we, will we, won't we, will we go to hospital?

Apologies to C S Lewis for adapting part of "The Lobster Quadrille" but it really is a good summary of where our lives are at the moment with N.

This gut pain issue is continuing, seems to be worsening and definitely seems to be never ending!

Since 13 June he has now been admitted to hospital no less than 4 times for pain management when the gut pain gets to the point I can't manage it with paracetamol and ibuprophen.
We have gone through simply litres of the medication since June. I'm not kidding - 2 500ml bottles of paracetamol disappeared in a little over a month and that was just one month over the past 7 or 8 as it's been worsening.
I'm sick of the smell of it, the sticky residues on the bench, cleaning it out of syringes and little measuring cups because as you get through a bottle the syringe won't reach the medicine any more.

One of his admissions, the July one, he wound up going in by ambulance as he was retching and occasionally vomiting with the pain and had done all day. I didn't like my chances of getting him to hospital without causing him immense pain and so thought the ambulance best. That trip was the first time they gave him intranasal fentynal for pain relief. That's used for heavy duty pain or a sedative. That was because codeine wasn't helping.

This last admission they used it again - and it didn't touch the pain.

We are both so tired. Tired of the never ending dance, guessing and second guessing ourselves.
Do we take him in or not?
Is he bad enough yet?
Are we leaving it too late?
Will he pull back from the brink?

We are also tired of sitting in the ED - mostly they make their 6 hour window - just. But I have spent 8 1/2 hours down there at one point on a crazy busy day.
We are tired of broken nights in hospital.
We are tired of scrambling at home before we take him in, and once we get home - tidying, picking up the threads again, reassuring T, finding out how far behind in his school work W has got and so on.

But most of all we are tired of watching our child in pain.
He is constantly in some level of pain but when things are bad you watch him lying as still as he can until another wave of pain hits. He goes white, doubles over, grits his teeth and often releases an involuntary moan.

I wondered sometimes about the saying 'wracked with pain' before - but now I've seen it personified in my 11 yr old.
A nurse watching him in this state in his most recent admission immediately upgraded his triage status from a 3 to a 2 as she decided he needed a doctor to authorise pain relief NOW.
The hardest thing about it is not watching him (although that's heartbreaking beyond belief) but not being able to do a single thing to help him - or prevent the next bout.
We know it's inevitably going to happen, we can watch him decline down into it, and we have to sit impotently by.

He managed 6 weeks between his June admission and his July one.
He managed almost exactly 4 weeks between July and August admissions.
He got congratulated on doing longer this time when he was in ED - it was 5 weeks, nearly 6, between admissions!

It has got to the point where I don't plan appointments for anything in the run up to that time. Usually it's only 'safe' to plan in the immediate aftermath of a hospitalisation as he comes out a little more stable. But this time he's come out almost as unstable as he went in. He's already having all his possible doses of pain relief a day although the spaces between them are longer. His eating is affected like it is when we're coming close to an admission. But it's only a week since his last trip, the washing and housework has only recently been caught up with, and I'm certainly not ready for another marathon session of trying to distract him with never ending games of Connect 4 and Battleship! I have come to hate Battleship!

And so our lives are constantly in limbo as we watch N circle the drain and we wonder - will we, won't we, will we, won't we, will we take him to hospital - again.