Round and Round the Mulberry Bush...

I may have posted under this heading before - I can't remember.
My version of groundhog day consists of waiting for doctors, seeing doctors, going to chemists, organising follow up appointments - oh and the odd bit of research in between!

And so to T news - we saw the surgeon today and he is happy that the wrap is in place, that there is no gross reflux, that the wrap is relaxing to let food through, the stomach has good capacity and that there are no obvious obstructions in the oesophagus.
He has said there is nothing surgical he can offer - if he went in there he wouldn't know what to operate ON!

However - we're all agreed that something is not right. And so T is now on the list for a scope and biopsy. While nothing showed up on the barium as needing dilation he said he may well put a dilator down anyway on the off chance while he's in there.

We are stuck in the public system and all the waiting that entails because, just as the hospital has the only paed radiologist south of Taupo, so the hospital has the only paed pathologist. The surgeon has said by doing the scope in hospital he can take the biopsies down to the lab himself and talk to the pathologist.
The other advantage is that should nothing show on the scope then there are visiting paed gastroenterologists from Auckland who come to Wellington and he can discuss the case with them and all the info is in the one file.

So while I have a severe allergic reaction to Wellington Hospital I have to suck it up and manage it for T's benefit because this is the only way in this stupid country to access the paed specialists to get the best results for T.
And it's all about T.

He has prescribed T omeprazole and mylanta - working on the basis that something's inflamed inside and that's why he's having the problems.
So we3'll give it a whirl and see what happens, even though he has spun me the old old line of omeprazole having no side effects and completely safe for a life time - um...not so...and as I said to him, I've done my reading on this stuff.
But again, we're ticking boxes, ruling things in or out.

Frustratingly he has looked at T and said he thinks he's nicely in proportion and looks like he's holding his own and energy levels are fine. This is the kid who isn't concentrating anywhere near as long as he used to, can't make much headway on his school work, can't play for as long as he used to, is resting much of the time, and has even spent the past 2 Sundays crying in my arms as he's tired and wants to go home - yet, the surgeon who attends the same Mass, has somehow missed this.
I did say that it's taking a lot of work to keep T in this condition and he just smiled. But T's fragility has got to the point where I can't even have a shower without him being in tears - it was literally 10 mins this morning.
The over tired, fragile child wail rises at relentlessly regular intervals in this household.

So I guess we're looking at inflammation caused by SOMETHING as yet unknown - most likely culprit is allergies, or some kind of subtle narrowing which didn't show up on the sheer unmitigated disaster which was his barium 'swallow'.
Allergic oesophagitis or EE can be treated with steroids to deal to the initial inflammation and then a restricted diet there after.

I just want my happy T back, my T who was starting the day wanting to do schoolwork, my T who would punch his brothers instead of just sit and cry if they annoyed him. I want my wonderful eater back. I want the invigorating success and voyage of discovery we were having unpacking the depths of this child who was finally painfree and thriving.

I don't want to be waiting, losing more time, watching him decline and fall further behind again. We've been losing time, waiting for doctors ever since this kid was born. But, yet again, you can't hurry the system.

At least we have a good surgeon and paed behind us this time - even if every fibre of my being is screaming to just get ON WITH IT AND FIX HIM!