Fight the Good Fight

It's been a while, quite a while since I last posted and in part that's because I kept hoping to have good news to post.
However, as typical round here things are never as they seem and in the end things are either not resolved to any conclusion - good or otherwise, or wind up in a bigger mess than ever before!

There's a lot going on for W - stuff I can't get into here and now because there are a lot of things to evolve first but needless to say it's going to be a David and Goliath fight but one David is going to win.

We're going to win for a couple of reasons - 1 - because the relevant government sector has dropped the ball so incredibly badly that there is no way the decision made can stand on the current basis (and now we have a much better idea of exactly what they are looking for we can re-write the information in such a way as to tick all their boxes!) but - 2 - because it's our child we're fighting for and his future. There is no greater incentive, no greater investment, no greater motivation.
I will not and can not just throw away everything we've strived for over the years - or allow anyone else to do that.
But it's been really intense and emotional and required a huge amount of head down research, emails, planning and the occasional meeting.

I can't remember if I've written about N and where he's at lately but things are going from difficult to messy with him too.
We realised last year that he needs transition time from being homeschooled before he goes to a secondary school - that will happen at the start of 2014 so we don't really have that long to sort ourselves out.
However we also realised that needing to drink between 1.5 Litres to 2 Litres of liquid a day really isn't compatible with school. Especially when he needs it reasonably cool and it's Ensure (a reconstituted powder mixed with water).
The paed agreed that his liquid intake and school wasn't going to work and we'd already tried mixing the Ensure with milk to boost the calories and decrease the volumes to no avail - try constipation to the point of a bleeding anal fissure for size.

So we tried to halve the volumes and limit it to out of school hours. While that was a sheer and unmitigated failure with 3 of the hardest weeks I have experienced in a very long time it did show us very clearly a few things - that he needs the regular 'doses' of calorie intake or his behaviour and school work deteriorate beyond all comprehension, that he really really needs all those calories as he lost 1.5kg in 3 weeks and didn't increase his eating to compensate, and the fights we had over getting only 750 ml in outside school hours was an impossible task and meant his stomach was so overloaded he absolutely wouldn't eat.

The day we met with the paed and all declared the experiment an abject failure and she agreed school was looking nigh on impossible unless we juggled something was also the day we got told by the relevant govt agency they had declined W for what were incorrect (and things we had never stated) reasons.

To say there were tears shed would be understatement.

It felt like the world was caving in and that we had totally lost the battle for both the boys.

Just as I was picking myself up a little from all of that it was time for the younger two's monthly weigh-in and I discovered that T hadn't gained in nearly 3 months and the GP wanted his feeds INCREASED.
I'd just nutted out a plan to get him free of day feeds by Christmas and was looking forward greatly to freedom from the tyranny of watching the clock, remembering when best to hook him up to keep energy levels up nut not compromise any chances of a decent meal, cleaning tubing, feed containers etc. Never mind the fact that once we jump the day feed hurdle any decreases then come off the night feed which means I get to actually sleep.

And so, devastated once again, I did as I was told and increased his feeds. She'd said to do it even just for 2 weeks. So, because I was so desperately keen to get him back on track (and very mindful of the fact we had a dietitian appointment in about a month and she'd be on my back about not decreasing) I took him back after only 2 weeks.

SUCCESS! A 500g gain in two weeks. That wasn't just because of an extra 50ml of formula a day. It was because I was concentrating and making sure I offered food whenever he seems to possibly be interested.
It was because I wasn't struggling with a tearful, tantrum-throwing, headachy, calorie-deficit stricken N.
An N who really couldn't be left unattended for long.
An N who left himself and us all drained and completely spent by the end of the day.
An N who had the whole family treading on egg-shells in fear of provoking the next melt down which would either result in screaming, swearing and crying for the next 30 mins or a violent attack launched on someone and then followed by the screaming, swearing and crying for the next 30 mins.

I felt dreadful. By focusing closely on one kid another had suffered. I was juggling and had dropped a ball - significantly.
I know all parents juggle all the time, that one kid requires an intense focus for a while and another has to take the back seat. But in this case the juggling act is such high stakes that you can't afford to juggle and drop.
At least it wasn't quite as bad as the last big push on N's eating when T managed to lose 500g!

Add to this he sneaking, fearful suspicion that T's dreaded 'gloopies' may be re-appearing.
Complaints of sore tummies, feeling full fast and lots of burping just add to the sense of urgency to get him off the tube. I never want to see him in as much pain as he was back then.
I also don't know how often you can re-site a tube - or how often our surgeon would be prepared to do it!
How many holes can you poke in a stomach anyway?

At the moment he seems in reasonable spirits although fear clutched it's cold hand around my heart about a week ago when he was so uncomfortable during his feed he started retching.
Night feeds don't appear to be causing problems - probably because they are run a little slower but also because he's asleep and so less aware of how he's feeling.

But in light of this we're now working to get T to drink some of his formula orally.
In life BG (Before Gloopies) he was drinking around 200 mls a day and not having day feeds. The ay feeds only started because of volumes, calorie deficits during the day and lack of solid food and later puree only restrictions.
So we're slowly cranking that back up again and he's been drinking some Neocate each afternoon for the past week. We're now up to 130 mls!
So keep your fingers crossed for a weight gain this month and so we can decrease the the tubed volumes which are currently cruising at 170mls - yes that's right down to ONE  day feed!
In this process I'm hoping to get the oral volumes to 200 mls and once the day tube feed gets below 150 mls we'll chuck the extra into his night feed. So I'll be up for some horribly long nights again but hopefully only for a couple of months and then we're back onto the tube-free life expectation track!
That's all assuming the gloopies don't de-rail it with their evil presence. It was about a year from first tube placement before they started off, this time it's only 6 months since the re-siting operation. The whole prospect terrifies me to be absolutely honest and just makes me want to sit and cry.

So if I've been 'absent', quiet, short-tempered and grumpy, anti-social and generally a crap friend and missed events etc then I'm sorry but now you know why!

The constant juggle turned out to be performed with live grenades and ended in the inevitable fashion.
Darling N pointed out today "Your hair is going grey Mummy"
Yes darling there's no wonder - and actually it's going white - totally skipping the grey.
I must have dropped that ball somewhere too.