The Two Step Shuffle...

Or maybe that should be two steps forwards, one step back...
It feels like so much of the time with the kids.

T has finally been able to switch to a button from his long tube. He is revelling in the liberation - time on the trampoline, faster feeds, not having to be careful of the connection between the gastrostomy tube and the feeding pump tubing, longer tubing so a longer 'leash' while he's being fed too.
I'm enjoying not worrying about the join between the tubing too, not fluffing around with sticky first aid tape trying to keep two bits of tubing pushed into place, while also pinching the gastrostomy tube shut and of course wrapping the tape around without it sticking to itself!

What kind of complete idiot decided it was a good idea to design a tube which inevitable contain stomach contents/acid/electrolytes etc but NOT include a clamp in the design still eludes me but I checked on their web site out of curiosity and the MIC gastrostomy tube definitely does not include a clamp, only the extension tubes for the MIC-KEY  low profile button. All I can say is who ever designed it never had to use it and certainly never had to use it on a child!

The switch over from tube to button was a pretty horrendous mission but T seems to have recovered. He was very unhappy about it being used at all and we've still to figure out a way to hook him up without him lying down first, but he's much happier about it all now.

I was really looking forward to it, not only for the lack of dexterity challenges 6 times a day (got to do it all in reverse at the feed's end) but also so that I could speed his feeds up and make serious progress on the eating front. However that's where the step backwards part kicks in!

I cheerfully increased his flow rate from 150ml/hr which had been the maximum we could safely run the pump before without a tubing blow-out, to 200ml/hr. No probs - cool! So I sat there and figured if we can increase by 50 ml day then we'll be back to our pre-op level of 400ml/hr by this Sunday.
250 mls and no issues with a morning feed, come afternoon and it's a different story. T was nauseated and threatening to retch. Longish term followers of this saga will know that retching is territory I NEVER want to see again so my heart plummeted.

But he didn't start complaining until almost the end of the feed so I tried to stifle my fears but ditched the flow rate increase for the next day. That was today and although we had no complaints of pain or nausea today he was completely disinterested in dinner - didn't even touch his cranberry juice which is very very unusual for him. He hadn't finished his afternoon tea either which, considering it was a freshly baked brownie - is also a red flag. He said his tummy was still full - physiologically exceedingly unlikely. So I suspect his tummy is still a little bothered by the increased flow rate.

It's not too surprising. The surgery, although we think of it as just closing one hole in his tummy and making another, WAS gastric surgery and I'd guess the old stoma is sensitive and things may not feel so comfy as it stretches and pulls as his tummy fills. The surgery was only 6 weeks ago today.

And so I'll hold off on another flow rate increase tomorrow - so much for 400ml/hr by Sunday. Still we are at 250mls which is an increase of 100ml/hr since Tuesday!

His eating is patchy, has been ever since the op. I'd put it down to the long slow feeds stifling appetite but that trend still seems to be continuing. He had 5 fish fingers for lunch today - something which would have only happened on a good day BEFORE the gloopies hit. But then no dinner.
Hopefully this is just a recovery wobble and not a sign of future issues.

On reflection of course I have no idea what he could actually TOLERATE pre-op. Feeds routinely ended in retching and misery. I only had him running so fast pre-op because he'd start retching about 20 mins into the feed and 20 mins into a slower feed left a lot more feed to go down. A fast feed meant the retching started when the end was in sight and the retching didn't seem any worse.
Maybe 250mls is where he's okay??

If so I'll have to be pretty precise with timings so that he has at least 2 hours between feeds and meals - oh goodie, back on the treadmill!

And then we have N.
I thought he was making progress - no I know he was making progress - it's recorded in his food diaries.
It's so easy to focus on that particular day and not see the patterns - the food diaries are good for that.

After months and months of breakfast being a battle ground when it had been a regular, eaten feature - we finally have breakfast back. I was even getting some increases in volume at breakfast time.
I was even getting a little of something eaten at every meal mostly - more often than not!
Sure, seriously not enough, not to survive on, not a balanced diet - but still it was food going in!

And we've had a run of days with virtually nothing eaten, grumpy, obnoxious, horrible behaviour, stupidity over schoolwork and just generally every day put you through the wringer.

However not all is lost - it's the 2 steps forwards, 1 backwards thing again.
I have noticed when he stops eating it's for a shorter time period these days.
I'm also getting an increase in volume in his dinners - I weigh his meals before and after and even 3 months ago we were lucky to get 80g of anything into him. These days more normal is 100g and yesterday he clocked up 200g and tonight 150g.
Yes, there are regularly days when all he'll have is a nibble of roast potato and call it dinner but the wider picture is showing some improvement.

The other improvement I've seen which really does excite me is a growing awareness of his own needs.
He's commented on occasions that his tummy is grumbling.
He's commented he is really hungry - and not in a grandstanding, see how loud I can shout it to attract attention and because it's the worst possible time to make a spectacle, but in a "Gee I'm glad it's dinner time because I'm really hungry" kind of way.
He's also commented twice now when he has a headache coming on and that he'd better get himself a Fortisip. His new found awareness has warded off a retching spell at least twice now.

And just as I see some light at the end of the tunnel I know we have an on-coming derailment.
In their wisdom Pharmac, our drug buying company here in NZ, have cut the subsidy on oral high cal pre-mixed drinks in favour of powdered formulations. So for N that means that, when I call the pharmacy tomorrow I will be ordering his last repeat of Fortisip.
After that he will switch to a powder formula called Ensure. He hates the stuff.
Just to add to the 'fun' it's only 1 cal per ml. Fortisip is 1.5 cal per ml.
N is drinking 1 litre of Fortisip a day on a good day, an extra 200 ml on a bad day.
So he'll have to drink 1.5 litres of Ensure a day on a good day, just to maintain where he's at.

Where he's at right now has seen him have increased and improved growth and weight gain. It's seen better focus on things, generally improved behaviour, better health, faster healing and so on.
This is something I really want to maintain. I also really want to maintain the slow but happening increments in his eating.

I know, because we tried Ensure before, that what I will have is a battle to get him to drink any of it and a total lack in appetite due to drowning in the wretched supplement.
We stand to lose all the little we've gained so far.

I breaks my heart to stand and watch the crash happening in slow motion but there is NOTHING I can do to stop this.
He has to drink the stuff to stay well, growing and safe. But he won't and even if he does he won't want to eat.

I'll get him weighed again in a week and then again at the end of the Fortisip at the end of June. I'll get his weight monitored more closely by the GP in the intervening months and see the paed in August - assuming the wheels haven't fallen off badly in the meantime in terms of his weight. We then see this other doc who is the expert in eating disorders but honestly - if it's the product we have to use causing the increased problem then I can't see what she can do to help with it.

I know what we'll see in terms of the food consumed and all the other good things which have been happening. And I can't see any way out that doesn't involve surgery for N. All I can do is hope and pray that the intervening months while we have to let him deteriorate won't severely damage his slight progress in eating and attitude towards it.