As hope fades

I'd thought of a post on being stuck in medical limbo - again - waiting for doctors to finally do something.
That's what I've been writing in my head for the last month anyway.

But just yesterday all hopes were dashed.

P has been saying for some time that he'd given up hope N will ever eat properly again.
He'd also been saying that the surgeon won't do anything when it came to the crunch.
I'd stayed optimistic - if I give up on N then there's no one believing in him, no one pushing forwards, trying, hoping, praying it'll work out in the end.
I'd also believed in the surgeon - he said he'd try a naso-gastric tube trial in September when we saw him, he'd called me at home twice to discuss where things were at, the hospital teacher had called me as well on his request, when N was in hospital for suspected appendicitis early in November we saw him then and as recently as 4 November he said he'd admit N.

We happen to see him socially as well and he'd chatted informally with us, happy and smiling.
I said to P that he's a straightforward, honest guy and he simply wouldn't behave like that if nothing was going to happen for N.

So we put our lives semi on hold. P pulled out of a Christmas concert with the prospect of N's hospital admission, I juggled round the kids' schoolwork and sorted out ways for the household and school work to run with several days out of action.

And nothing happened.
And nothing happened.
And nothing happened.
The paed asked us what was happening as he'd said to her he'd do this trial - we said we didn't know.

Finally I asked the GP to write a clinical account of how N was during his last retching/headache/vomiting/nausea episode since it was the first time she'd seen one and definitely there was no other cause for it other than his not eating and drinking. She said she'd do one better and ring the surgeon.

Our hopes raised.

And were dashed.

She called me back and said the surgeon has categorically told her he will not even do a trial never mind put a tube in. If N was on the 3rd centile and lethargic all the time then he'd consider it but the international studies said that while it might help it might make things worse and the risks of the surgery outweigh the benefits. He recommends seeing an educational psychologist. We also got the tired old story of time and puberty will make him want to eat.

And so there is no more hope.

N is on the 3rd centile for weight - and static so will naturally travel further away with time.
He doesn't have the stamina to do a full 3/4 hour swimming lesson.
He can't drink large volumes at a time - the surgeon says this is because of his nissen (the reflux surgery) working properly - and so needs smaller volumes frequently.
He has these episodes around once every 3-4 weeks. By my count of events recorded in his food diary he's had 39 acute days between January and end of November. That's not including the day each time it takes to claw him back from it, or the times it started late in the day or in the morning and I managed to get him to drink enough to ward it off. So it'd be easily 80 days a year affected by ill-health due to his eating.
Days he'd be unable to attend school.
The kid's bright but not that bright that he can do a year's school on only 3 out of 4 terms.
The paed has already agreed that the way things are he is unable to go to school anyway.

Puberty is largely affected by weight (see fact weight is static!) and he's showing no signs at nearly 11. It's quite likely he'd be late going into puberty anyway so by the time he's 14 or so the non-eating habit will have been going for 7 years. Real likely that a habit that well formed will just change miraculously by itself.

I'd love to see international studies dealing with N's unique cluster of issues - ADHD affected eating, appetite suppressant meds at the same time as eating causing pain, extensive reflux history impacting on eating when younger - and what they say about the use of any kind of supplementary feeding.

I have no concerns about his academic ability, never have had.
Only the impacts of not eating has on his behaviour and ability to learn.
Telling us to see an ed psych is about as much use as telling the parents of a child failing to learn because they are hungry and parents can't afford the food to see an ed psych.


We often smell ketones on his breath due to lack of calories and he's complaining he feels his heart skipping beats at times when he's not eating/drinking much. I hate to think what the long term health consequences are of this for N.


And so, we'll have to increase his Ensure volumes. He roughly needs 2000 cal a day and we've been supplementing to 1500 but his weight is static and everything else also says he needs more.
We haven't increased until now because drinking 2 litres of 'milkshake' a day will totally kill his residual desire to eat.


But we have no choices left now.
There is no hope now.

The surgeon said he would only consider a tube as a last resort - what else is there for us to do?

I still remain of the opinion that I can get him eating again if I have the right tools.
But I have just been denied that.


And so we have made a paed appointment for N.
Not to discuss what progress he's made or where to from here
No, the time for planning to get out of this mess has gone.
We are simply going to have to tell her where we are at - and give her the forms for N to do Correspondence School funded through Health.

All that hope, those dreams, the planning are gone.


There is no way forward, ladder out of the hole - just deeper into the abyss.




I feel betrayed - betrayed by the surgeon who didn't even have the courage to tell us to our faces, explain how his decisions can change so radically in 24 days when the clinical picture hasn't.
We did everything he asked - bloods, x-rays, endocrinologists, adolescent health specialist (total waste of time) and above all waited for things to improve.
He took a risk in T's care - and wrought something which was nothing short of a miracle - but won't even try for N.


Paeds, paed surgeons, GPs - they all get to sign off on the kid's care. We never get to sign off on the duty of care for the kids.


My beautiful, bright, bubbling boy, so social and engaging, who would thrive at school given the right supports and tools - cast to one side for what are incomprehensible reasons.


The fight is over and hope has gone.