As the sand moves through the hourglass so are the Days of Our Lives

And so - where were we last?
W broke his arm and it healed - easy.
P's grandfather died - not so easy.
T saw the surgeon, GP multiple times and the dietician - not so easy.

GP's monitoring weight - T dropped 1 kg but has very slowly inched back up again but we're still playing around with fortnightly weigh ins.
Dietician decided T was best restricted to purees and soft foods only and to have his night feeds/formula intake increased back up to 1000ml/24 hrs. The vast majority of this is being tubed.
Surgeon decided he wanted a barium swallow done to see what's going on in there.

The barium swallow was a saga of epic proportions and one which was broken into two attempts - the first attempt went like this -
He was all happy and smiles until they laid him on the bed - then the screaming started and continued to the point of retching. Funny really they were all running for bowls etc but the kid can't puke...

I have not seen so much barium on the ...floor, in a kid's hair, all over their face, down their neck, soaking a gown since W's nerve shattering one aged 18 months. The older two were fine aged 5 and 6ish so I assumed T would be too. I guess he's had more medical intervention than the other two.

So they put some barium down his tube and checked out the fundoplication that way. The wrap is definitely intact. Absolutely no sign of reflux whatsoever despite screaming fit to burst so if there was any chance of reflux he would have done it.
So we have half the results - and it's the half I was confident about. You could have knocked me over with a feather if they'd found the wrap had undone or that he was refluxing again.

However all his symptoms are upper oesophgeal and so getting him to drink some barium was essential and that's when he really lost the plot - spitting it out even when they were holding his nose to make him swallow.
They only need about 5 good swallows but could we get it? No way!

So we waited for him to calm, got nowhere, and then discussed possibilities.
The radiographer said that either - we get Mr B to scope him - which he has said he doesn't want to do (although I can see that coming as the next step anyway), we come back in 3-4 weeks, or they put down an ng tube and get the barium down that way.

T would have TOTALLY freaked and been horribly traumatised if we had to ng tube him - anything in his nose sends him off the deep end - it obviously brings back memories of his ng feeds as a baby. Honestly I'm not sure I could keep it together watching them do it either as having to put the tube down him at home was one of the worst things I have EVER had to do to my kids and something I actually still have nightmares about periodically.

I explained about how he's really struggling to eat, lost weight, doing 10 hours of feeds overnight and that I really didn't feel he could wait another month and then 2 weeks beyond that to see Mr B and then waiting to fix whatever.

So she checked it out and found she has a slot next Friday at 9am when we can give it another go - and results will be back in time for our 6 Sept appt. We have agreed that if he won't drink next time then we will have to do the ng tube option.

And so we returned the following Friday and it went like this -

Got there, all fine and dandy, even hopped on the table fine - then they produced the barium and the screaming started again.
Bright red face, screaming, shaking with fear etc - and nothing drunk - spitting it out left right and centre.

So then it was all on. She gave us 3 choices - get everyone involved to hold him down to put the ng tube down - not fun at all and unlikely to work, wrap him in a big sheet firmly, hold him down and try to get it down him - again problematic esp as they know from last week that he's actually very strong. Or use a contraption she'd designed to pin him down while they put the tube down, add the barium and take the pics. She warned us it looked like a torture instrument but assured us that it would be certain to be quick this way and he wouldn't be able to move at all.

So you opt for the most successful option when nothing's going to be nice anyway - don't you?

She pulled out this thing - a plank of wood with 2 plastic rings - one at the head and one at the foot.
Then produced various velcro and fabric straps, a towel to pad the plank etc.

T kept screaming and clinging to me all the way through this and wouldn't calm at all despite my efforts to get him to look away or distract him. So I placed him on the plank and the fight was all on again.

They strapped his legs from the ankles to almost top of his thighs to the plank - he kept pulling it off in the fight so they wound up tying knots in the velcro and in the end his bottom half looked like a mummy. They then got more velcro straps and tied his arms above his head to the ring around his head. Again they had to knot it really firmly as he kept wriggling loose. He's got nasty red marks on his arms from where the ring was digging into his arms. It still took 3 people to hold him down despite this.
She shovelled the ng down - he was screaming all the time - and sort of gurgling and choking as she put it down.

He continued to scream all the time she put the barium down and took the pictures - struggling, shuddering and fighting all the way.

She says they got a few good pictures - and there appears to be nothing wrong.

So in effect we did this to T for nothing.

We still have no answers - no blockage, wrap in the right place and functioning etc.

I'm devastated needless to say.
It doesn't explain a sodding thing and why the kid's in pain, makes glooping noises, can't eat much and says food gets stuck on the way down.

I'm hoping that, since they had to put the ng down - and it appeared a fair way down his chest (being able to see the ribs helps) that maybe they missed a blockage higher up - he complains of pain higher in his chest. Maybe if it's only a very slight blockage - which explains the lack of regurgitation, that all the screaming forced things past? The ng was very very thin - looked like the gauge they used on him when he was 3 months old.

Maybe it is an allergic oesophagitis thing - in which case a scope and biopsy again will tell us that.
I'm sure a scope would give more detailed info - Mr B can look at the tissues, see colour, health, any changes, see in much more detail than simply shadows on a screen with a child screaming his lungs out. Biopsies may give more info too.

So now we have to persuade Mr B into it and further investigations. SOMETHING is not RIGHT.
He looked sore yesterday and I asked if he was okay - he said he was sore but it was okay - it was ordinary sore not really sore.
He can't and shouldn't have to live with that.
He has to be able to eat.

If I have to accept that oral feeding is for fun only and he is going to be permanently tube dependent I can and will but NOT until after every possibility, however remote has been checked first. This kid WANTS to eat but it hurts and we have to find out why.

Since then I've had an informal conversation with the surgeon, we ran into each other, and he has said that if there was nothing obvious on the barium pictures then he would scope T. He did say that they would get to the bottom of the problem for us.

We see the surgeon on the 6th so hopefully I'll have a date for the scope to report back then.

In the meantime I have a T who, rather than being a train full of steam, keeps running out of puff. He rests regularly throughout the day and today was complaining of enough pain that he wanted pain relief - as well as to go and see Mr B right now so he could stop him hurting.
The newest development is that he was retching and saying he felt like being sick this morning - whether it was pain related or something gastro-intestinal I don't know.

And so we get sucked back down into the medical quagmire which seems to swirl round us, sometimes loosening it's grip but never letting us escape completely.