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.

The tangled tapestry of life

There are a million thoughts zapping round and this post has largely been sparked by a couple of Face Book conversations today, but also the time of year it is for me - laden with anniversaries as it is.

Parenting is certainly not for the faint hearted.
No one ever said it was going to be easy.
It's one of those things in life you actually have to approach in an emotional way to make a good job of it I think. As T went into surgery recently someone told me not to worry about him - if I wasn't worrying I actually wasn't doing my job.

But how do you manage those emotions, how do you harness them for the good of your parenting and not let them bog you down, stopping the progress which is vital for both you and your child/children in life's journey?

From one of the discussion today which got me thinking I wonder how you even classify emotions - one person's regret is another's grief is another's guilt. Parenting seems to be laden with opportunities for guilt but what is it really? People talk about 'mother guilt' but is guilt really a conglomeration of emotions and not actually a single emotion at all?

The tricky bit to labeling motions is that, by their nature, they aren't rational. You can't pin them down, they squirm and flip away from you under the pin of a label.
'Mother guilt', so called guilt over events, choices, even things which there was no way you could control, rationally you know that, but the shoulda, woulda, couldas will always haunt you.
I think so called guilt, in parenting terms anyway, isn't a true, single, isolatable emotion but a conglomeration.
It's a mixture of many other emotions and probably the primary elements are those of sadness, regret, frustration, anger at the situation you find yourself in, however the situation arose, what ever 'choices' got you there.
Responsibility also sneaks in there. You wouldn't feel these other things if you didn't feel responsible, responsible for this small person entrusted to you, responsible for your decisions and the outcomes - whether they could actually be predicted or not, even if you actually can't be held responsible for the events or outcomes - I told you emotions aren't rational!

Born from this emotion of responsibility I think comes the search which is almost universal in parenting, well good parenting anyway,  the constant search for what is best for your particular child. It doesn't actually matter what path you took to become a parent, what hurdles you've jumped, how smooth, medical or otherwise your path has been. It is the search to do the best you can that unites us all.

The impact of the hurdles, how far you actually CAN jump, where your expectations lie, what your hopes and dreams are for that child - that is affected by your path, but not that core desire.
That's why parenting, especially modern parenting is a competitive sport in so many arenas.

Your perception of the size of those hurdles is also shaped by your path and so how much each individual bit impacts on you as you journey through your parenting. For some their biggest hurdle is being able to breast feed or not, for others your child living through another night is it. Some beg, hope, plead and pray that their child will be able to walk, talk, see.
I know that over the past few months with T's eating difficulties, N's have paled in comparison.
I had a child who WANTED to eat - but who couldn't. We were staring down the barrel of very slow continuous tube feeds and virtually no solid food for years to come.
But that doesn't make N's issues any less important, significant - or emotionally important.
It's all relative to the person and child - the molehill in one person's view may well be the biggest mountain that person's ever encountered.
Often people say to me they feel they shouldn't complain/worry/whatever about their child and their issues when so much more is going on for my boys. But their issues do not de-value someone else's mountain, just as my boys' issues are laughable to someone else with a critically ill child - they'd love to swap situations I'm sure.

But it is this emotional journey in parenting, this responsibility, guilt, whatever emotion is popping at that time that affects and guides us to be better parents.
And so when a new problem arises, new research comes out, events change and you realise that decisions you made - even those which were really beyond your control - actually may have laid the groundwork for a new issue, problem, hurdle - you react emotionally.

For those where life is more complex, there is always an element of on-going grief. I don't think you can parent a child with 'differences' without it. It is a constantly evolving spiral. Some times you are further away from it and other times it is brought into sharp relief. It may not even be a new issue or a new face of the same issue which sharpens it up. It can be anniversaries, reminders of what has happened, what could have been.
I spent time today gathering information to start an assessment process for W and I think of what might have been, how different his life could have been if only he hadn't been early. Some times that's just a twinge, other times, like now in the run up to his birthday it's a lot sharper.

I look at T reveling in eating chippies today, a huge grin over his face. Some days that's fantastic to watch, other days it's bitter sweet as I contemplate how different, how unscarred his tummy would have been if only I'd stood my ground when he was a baby, if only the doctor hadn't dropped the ball so badly.
Situations both well out of my control, times when I made the best decisions I could based on what information available at the time - but that drive to do the best I can for the kids sits and niggles.
We gave W a medication for his reflux which carried a risk of cardiac problems. At the times we made the best decision we could. The reflux caused apnoea episodes which the medication reduced. We had the 'choice' of keeping him breathing now and face potential issues later. When it looked like that had come home to roost a couple of years ago I felt dreadful, second-guessing every element of that so-called decision, feeling guilty.

It doesn't have to be a life and death situation like that to trigger that emotional response. It can be triggered in a mother with a child with behaviour issues, health problems, whatever.  They were unable, for whatever reason to breast feed, and now research comes out showing reduced risk of the issue they are facing if only they'd breast fed. You can't go back on that decision, you can't change history, there may have been overwhelming medical, physical whatever reasons to totally justify or explain the feeding decision but the emotional response is there, the 'Oh crap, did I cause this? Could life have been different? What have I done?'

This is no reason NOT to put the information out there, but it is a reason for the visceral response so many have to this kind of situation.

I cannot change my kids' premature births, the damage done, the risk factors for all sorts of life long issues they face. But reading the studies, gathering the information still hurts, still leaves me with the woulda, coulda, shouldas, the emotional response. I need the information, I believe in aware, quiet watching, not expecting trouble but knowing the potential pot holes so when a stumble starts I don't wait to see the fall but jump in sooner than I otherwise would. But I don't have to LIKE the information.
Your response is often shaped by where you are on the journey too, I can handle reports of potential risks much better if I don't have a kid fresh from surgery, on the verge of a new issue being diagnosed.
Just as doctors know bad news is often greeted with anger, so those with new studies, research, information need to remember the core drive in parenting - the emotions involved.

Now I search out the information, I can choose when I'm feeling strong enough or need the information right now. So many of the 'humdrum', the 'ordinary' parenting situations are actually blasted in a way that you can't avoid. You can't choose when you are ready to receive the information. When I'm dealing with a really bad ADHD temper tantrum I do not want to open the paper and read some research saying it's diagnosed too freely and it's really bad parenting. That makes me react emotionally. You can't wonder at it really.

But the magic key, as I see it, is what you do with this emotion and how you harness it.
Bad news throws you into a hole. If you stay impossibly chipper all the time you probably aren't actually seeing the situation for what it is, taking it seriously.

You could get mad with the person bringing you the bad news - slinging insults, discrediting them in all sorts of ridiculous ways, sticking your fingers in your ears and lah lah lahing.
You can sit and cry for a while, contemplating the situation, feeling the complex and swirling emotions.
But eventually you have to do something, you have to progress the journey onwards - for your child's sake if not your own.

I personally use that time, after hitting the bottom and acknowledging it, to look at the situation and trying to map out a plan to fix or re-mediate the situation as best you can.
But again, so often, your response is part of your own unique parenting journey - is this the biggest mountain you have to climb? Is this your first stumbling point? Did you even expect a stumbling point in your journey?
In so many ways you also need this emotional fuel to keep moving, it stays with you, as part of your journey.
You don't, you can't let go, move on. It is part of what has shaped and fired your parenting - and all the emotions, in whatever form they come in, are all part of that spiral.

Now we are 6...

And just as AA Milne saw the wonder and magic in turning 6 so have we with T over these past 6 years and especially over the past 20 days since his latest surgery.

Yes, Mr Monster has turned 6 and we had a great party on the weekend to celebrate but what made it the biggest celebration of all was watching him tuck into chippies and other foods that he simply has not physically been able to eat for around 9 months and we truly wondered if he ever would be able to eat solid food without pain ever again.

Yesterday I made him his first batch of T friendly bread again in a long time. He ate half a slice with peanut butter for breakfast, ate 3/4 of a slice for lunch that day and a whole slice for breakfast this morning!
He is, once again talking about his 'Bye Bye Pump' party - and trust me, if his recent birthday was a good bash that one's going to be totally off the records!

We saw the paed yesterday for him and, well there wasn't much to say really. I do hate the way different scales weigh differently - GP on Monday said 16kg and 108.3cm, but the hosp scales and measurements said 106cm and 17.4 kg. Funny how the kid can shrink and gain so much over the space of 2 days...
She did comment that she has never come across the complications T has had with his tube - trust him to come up with something rare. The surgeon described it as a rare complication too but seen occasionally. Funny how I said right from the start it was something mechanical, and it was me who actually planted the suggestion of moving the tube in the first place.

We still have a long way to go and it's really not being helped by the fact that the tubing pops off his gastrostomy tube if we run his feeds very fast. I did get him back up to 90ml/hr flow rate today but that still means daytime feeds are taking a long time - 2 lots of 250 mls - and so daytime eating is being affected.
So I'm trying to be patient and see this time as exploring textures again - he did comment, while eating pizza the other day, that his mouth got sore. From his description I'd guess it was actually muscle fatigue after not eating anything that chewy for around 8-9 months. So there is ground to be regained.
We do see the surgeon for a follow up on 17 May and I've got everything crossed he'll say T is healed enough to move to a button again. That has an extension tube which locks into place and so we can progress his feeds rapidly back to his previous flow rates and then seriously work on eating.

I have to get his nurse to agree too - and actually see him! This has been a bit of a battle as it would appear the surgeon hasn't done a discharge form - she's in the public system and we had the op done privately. She seems to be rushed off her feet and since she doesn't have the relevant bit of paper she's not doing the work. T hasn't had any wound checks from her and it took two calls to even get to talk to her after discharge, and I've called twice since then but she's not returning my calls at all.
I know I've done all of this post tube placement stuff before but still, I'd feel happier with a bit of liaison and, heaven forbid, reassurance.


I guess it's an ill wind and all that because the GP has seen more than enough of T's belly!
We've had problems in the past with the surgeon's stitches being very neat, tight and tiny (that why they heal so nicely) and a total sod to get out!
It took two attempts after his first surgery to get them all, it took two attempts after N's surgery to get all his and it took nearly two attempts to get all W's - not because he was problematic but because they took so long.
This time it took 3 attempts before the GP bailed on the whole exercise and prescribed a sedative for the next attempt - for T NOT ME!
Tomorrow we have attempt #5 and the second under sedation as I found around 4 - 5 stitches which we didn't get the first 'successful' time.
I have also arranged to get his flu jab done at the same appointment - seems a pity to 'waste' the sedation since he's so anti anything medical at the moment!

I did mention to the paed that he really hasn't learnt a great deal over this year and is still a long way from being able to read etc. She wasn't concerned and said he'd catch up she was sure. I do keep reassuring myself that if he were a Steiner school kid he wouldn't be allowed anywhere near the written word at this age and you can't tell the difference in their achievement by age 9 or so. He has had an awful year in terms of having the energy or ability to learn anything - what with retching or sleeping about a 3rd of his day away most days.

  

That's a very small snippet of what life's been like for T after many feeds and often twice a day. It was a mild event that day and what you see is only a few moments of what can go on for 30-45 mins.

It is the fact that he is now eating without pain - and having feeds without this kind of endurance event which makes me so incredibly grateful for the surgeon and my persistence, his skills and courage to re-visit a situation and decide to change his mind and try to find an answer. Not many doctors, never mind surgeons, will actually change their minds so completely from a 'I wouldn't know what to operate on' to a 'I'll give this a try, no promises mind you'.

As P has commented in the past 10 days or so - we have our sparkly eyed T back again.
This surgery, although an ordeal, has to have been the best birthday present he could have got and has certainly given me a real Easter sense this year - of a new life for T, new growth and a real new hope.