It's life Jim, but not as you know it...or want it to be...

First off I'd like to say I've noticed that there are a small handful of followers here and I know I get a certain number of people reading from around the place.
It's nice to know that I'm not just blogging out into the ether and lovely to get comments from people too if what I've said strikes a chord, makes them think or whatever.

So thanks people for letting me know I'm not totally alone out here :-)

And so that said I have no idea how to sum up this one.
All the euphemisms of it being an ultra marathon, a roller coaster ride, waiting for the other shoe to drop and anything else you can think of don't quite sum it up.
It's been a veritable hail storm of shoes lately and I think I have the stitch in my running of this ultra marathon.

When I get news of varying descriptions I usually sit and process for a bit, maybe do a whole lot of reading, maybe throw a mental tantrum, rant and rave it's just not fair, kick a few walls in my head - and then you just have to get on with it.
That usually, for me, means more reading, thinking through the issues or new concern and how to manage it in the context of our day to day lives - and then picking up and doing it.

It's the only way when the kids are depending on you.

But you do need the headspace to do it in - and sometimes the shoes are falling so fast you get dizzy and just don't have time to process.

And so it has been this week.

T went and had his scope and biopsy last week and the very quick chat I had with the surgeon said that the oesophagus looked okay. So no scarring, no surgical problem - great news.
So then what's the problem??? The possibility of EE (eosinophilic oesophagitis) I thought had vanished too as there are usually tell tale signs in the oesophagus to be seen on the scope.
So - as per my protocol I start to do more in depth reading and discover that in 9 - 32% of kids with EE they don't have changes visible on endoscope.
So it's still a possibility - a rare presentation of a rare condition, um, yeah, that'd be us. Having talked to the dietitian this week as well she said that at the early stages of the disease there often aren't changes anyway - and if T has it that's where he'd be.
So we wait for the biopsy results which will tell us definitely yes or no.

On the basis of the endoscope being fine and knowing there isn't any scarring or narrowing and so the impaction risk is really really low we decided to give in to T's wishes and try him back on normal food.

That would be an epic fail to put it nicely!

We started on Monday with just some bread which he loves and hasn't had for about 2 months - this whole saga's been going on for nearly 6 months now. That resulted in hiccups and an attack of the 'gloopies' like we hadn't heard in ages.
But he was happy enough and so we gave him some bread the next morning.
That morning we had an appointment with the surgeon for N (that joy will be discussed in a later post!) and T was still cheerful although saying he was a little sore.
He happily declared to the surgeon that bread didn't hurt and the surgeon commented that T had more colour in his cheeks than he'd seen in some time. Certainly T's energy levels improved dramatically once we gave him something more solid than rice bubbles!

But it all turned to custard later on that day with loud, audible gloopies, frantically busy one moment and lying on the floor crying and resting the next and complaining of increasing pain. But the time P came home T was doing his last round of frantic activity running round and round the coffee table, laughing like crazy trying to catch one of his brothers. And then he absolutely hit the wall - screaming crying hysterically, totally inconsolable. He was complaining of a lot of pain in his tummy and chest too. In the end we put him to bed with no dinner eaten and his night feed on and loaded with a dose of pain killers. He needed another one around midnight that night too as the pain woke him.

I guess, at least he showed us that it wasn't all in our minds.

But P was taken by surprise at the mercurial changes in T's mood. I've got used to these sudden collapses over all this time as I have to deal with it most often but it had been a while since P'd experienced one first hand.
And so we emailed the dietitian that evening - only to get a call to come in for an urgent appointment the next morning.

End result is that he's now on 3 tube feeds during the day as well as his overnight ones. This way he won't be on the pump all night and we can keep his energy levels up during the day. BUT...and there's always a catch...he can't sustain much of a flow ate so even though we're starting on 100mls a time it's still taking a good 3/4 of an hour to get it down. So that seriously limits us in doing anything outside the house at the moment.

We're on day two of this new regime and in fact he has increasing pain levels, eating way less orally and actually quite miserable.

So my biggest fear - that with day tube feeds we can kiss goodbye to the oral eating skills we have worked so hard on and fought for - look like I was right. We'll see, it is only day two and he does have to learn to adapt.
But it's so depressing to be at this point after all we've been through to get him to eat.
He wants to eat, he cries to eat, but then he cries in pain as well.

His self report of pain hasn't matched with what I can see and suspect are the real pain levels and so I've just introduced a faces chart for him to indicate how sore he may or may not be. Interestingly he says he's only a little bit sore and then points to the 3rd or 4th face out of 5. I have double checked with him to be sure he understands the scale - it's a proper paed scale they use in hospitals etc that I've printed from the net and designed for kids slightly younger and older than him.
I've also been looking at pain rating scales that medical people use for assessing pain in kids who can't tell you how much pain they are in and my reading of those would rate his behaviours at about the same pain level as the face he is indicating rather than his verbal self report.
But so sad for him that he's experiencing pain like this.

The whole situation makes me feel heartsick. The child's journey has been so difficult and so full of painful experiences. I can only hope we find the light at the end of this particular tunnel for him soon.
Even if the final diagnosis is EE, at least we have an answer and can relieve the pain for him.

It's all such a long journey, one that I'm tired of, we make progress and then have it all snatched away.

I should be grateful for the tube - the tube I fought so long and hard to get for him. But I'm not, maybe I'm greedy but I want a kid who can eat as he wants, who doesn't live with pain, who doesn't wake at night, tell you he's in pain but "I can ignore it Mummy".
Why Thomas? Why us? Why can't things just go right for once for us and him??

But for now I have a little boy, sitting by my feet, groaning and who needs cuddles and care.