Never rains but it pours

This one's hard, really hard.
I'm actually really really annoyed, angry, sad, devastated - take your pick.
I think I've found the feeling of heart sick.

We've run into problems with T.

Again.
It's not fair and I just want to go around and kick things.
Hasn't the kid been through enough already?

Cosmic karma/chaos whatever - go pick on someone else and their family.

T has been finding it more and more difficult to eat - complaining of the sensation of food getting stuck - 'traffic jams' he calls it.
It was a patchy problem at first but become more and more frequent and he's been reducing what he's prepared to eat and how much he's prepared to eat.

He'd been making good progress and we had him down to around 450mls feed overnight, increasing his range of foods and quantity.
Now if he eats much at all then he's hiccupping, complaining of 'traffic jams' and burping.
So he's just not eating much and only soft foods now.

I took him back to the GP who said he definitely needs to go back to the surgeon.
So we're doing that on Tuesday - and I'll update after that.
The guesses are it's a motility issue or a stricture of some kind.

I'll review his early barium swallow results but from my reading a motility problem would also result in constipation, pain later after meals and more pain on sleeping with a full tummy.
He'd also be complaining after all foods not just hard ones.

A stricture could be either scarring as he healed from his reflux which wasn't such a problem as he used to eat fibre by fibre and in small amounts.
Now he's eating in bigger bites and larger quantities it can't squeeze down the space in his oesophagus, or what could be happening is a problem with the new valve between the oesophagus and tummy - formed by the fundoplication. It has to relax to let the food through and if it doesn't, or not for very long or until there's enough weight of food on it then you'll get the backing up problem.

From my reading a stricture or the achalasia (the valve issue) cause problems with hard foods or chewy foods but not soft foods until the problem is well advanced, and no problems with liquids - pretty much what T is doing. It also causes problems of feeling full after only a few bites - like he is complaining of (rather than part way through a meal and tummy pain later - the motility issues and not what he's doing).
The other hint is that he's not complaining of tummy pain but high chest, bottom of throat pain - which would tally with a stricture.

So I'm sure the surgeon will need testing done - certainly a barium swallow and study and quite possibly another gastroscopy. A stricture and achalasia can both be treated surgically quite effectively and simply. A motility issue now would mean life long meds with the potential for it to worsen - or improve.

Either way this has put us a long way off decreasing tube feeds, getting his eating well on track and saying goodbye to the pump and all the interventions.
As he's eating so little we've had to increase his feeds again - giving 700mls over the past two nights which in turn means very late nights for me waiting to turn off the pump so back to all that treadmill.
It's like we've suddenly shot back to at least January if not to last year.

I've always said I don't go backwards - look backwards to see where we've come from and learn from this yes, but actually go into reverse? No way!
I guess this, plus N now being back on 4 Fortisips a day as we're going nowhere with his eating either is to totally prove me wrong.

And to add to the totally snowed under feeling P's grandfather was involved in a serious accident this week and is essentially paralysed totally - some minimal movement in hands and feet but that's about it. He's in the specialised Spinal Unit and awaiting surgery on Friday but he's 90 so it's not going to be easy.

So there we have it - never rains but it pours and right now it feels like it's the middle of a thunderstorm!