You gotta have hope

Apologies to lyricist Benny Van Buren!

But I keep coming back to this thought.
A few months ago I said to a nurse, in the context of something else, if you don't have hope what else do you have?

You have to keep trying, hoping, praying - especially as sometimes when your back is pretty much against the wall there really isn't anything else!

So this is where we find ourselves, again, with T.
He isn't gaining weight, his eating is going from bad to worse, his retching spells can be extremely violent even to the extent that he can't swallow his saliva in between and winds up choking on it, and his on-going pain levels make him miserable.

After a particularly nasty bout of retching he came to me and said that he wishes he'd never been born because then he would never have got the gloopies.
In terms of quality of life we've hit close to the bottom for him right now.

The gastros have no real idea - we've tried medication with no response, possibly made things worse - and when a doctor says that 'hopefully he grow out of the problem but it'll take years not months' it doesn't make you very happy as a parent.

And so T is booked for his 4th surgery in 3 years, the 3rd in 2 years.
The surgeon said we have a good odds on chance that this will work but he's not offering any promises. They will be re-siting his gastrostomy button in this surgery. He will do it laproscopically and so he can have a good look around at the same time. He will close the old hole at stomach level and make a new one appropriate to his growth. We're all hoping that he may be able to use the same hole at skin level to bring the new gastrostomy out but that really depends on what he finds and considering the on-going granulation issues he's inclined to make a new exit point too.
He will try to go straight to a button rather than the long dangly tube which causes so many issues last time - but again the surgeon says things heal better with the long tube and, as always, we will do whatever has the best long term outcomes for T. The long tube is only as the tract heals so about 4-6 weeks.

It means an overnight stay in hospital due to needing an ng tube for drainage post op - and I'm hoping it will only be the one night but knowing T anything could happen. From the little I know about this surgery (last time was his fundo AND gastrostomy) it should only be about 30-45 mins on the table - but again he wants to check things out and this is T. He loves to throw curve balls at people!
Also I want to be sure the tube is working well before we go home because I don't need an urgent re-admission on my hands and with T's eating/lack of drinking he really really needs this tube.

And so I find myself hoping, madly, desperately, that this surgery is a good idea, that it will solve all the gastro issues and that it is the right thing to put him through.

I know that the surgeon simply wouldn't cut if he didn't think it was the best option for T. The gastros have suggested it as a possible answer and certainly a 'rule-out' option. There isn't anything else to try and we have to try everything before we resign ourselves to T leading a life of tube feedings and on-going miserable pain.

But there are always risks - not just those normally associated with surgery but to do with the over all condition T is in. The surgeon commented that at least T has good nutrition. Then he has an appointment with the dietician who expresses her concern over his nutrition as he's really only been getting a formula diet and says she wants extensive blood testing to get his baselines. Then that reminds me that last year the GP commented that T's iron levels were low but he'd be okay so long as he didn't bleed. T's eating has only got worse since then and is inevitably going to bleed with the surgery. So off we go to the GP to discuss that issue.
My file notes had said that his circulating levels were okay, just the stores were low. I was able to give the GP the date of the last bloods and so she got his results up and it turns out the results I thought were normal were only just normal.
So he's now on iron supplementation as a pre-op precaution and we also did bloods to check exact current levels.
All of this leaves T in a more vulnerable situation for going into the surgery.

But you've got to hope!
Hope he comes through the surgery fine, hope that the surgery fixes the whole issue and hope that his eating recovers quickly.

In terms of eating he's right back to square one where he was in Feb 09 when he had his initial surgery. He's getting 1000ml/day of formula all through the tube and his eating is minimal at best and over this past month he has even been refusing his brownies due to pain. He has been through so many periods in his life with under nutrition you have to wonder about any long term effects.

And still you simply have to hope - T doesn't give in, and neither can we.
In Benny Van Buren's song - You gotta have heart, from the Broadway Show "Damn Yankees" the baseball team is totally down on it's luck, can't win for losing and yet they look forward to one day when things improve.
And so we do likewise.

Life's Earthquakes can really shake you.

It's been a while since I posted and so much but yet so little has happened.
The title of this blog post is both literal and metaphorical.
In so many ways I feel I have nothing to worry about or complain about compared to the population of Christchurch, New Zealand.

A week ago yesterday their world was literally rocked on it's foundation by a 6.3 devastating earthquake. This is on top of their 7.1 in Sept last year. Last time no one was killed, this time it's currently 159 and climbing.
Some times life sends warnings, sometimes it takes no prisoners.
So many still without water, many still without power.
I think about how we'd cope in the same circumstances and can see why they have evacuated disabled children.
Despite our fairly well equipped emergency kit we would have to head to a welfare centre and take our chances or leave town. T needs his day feeds, I need to be able to clean feed containers in clean water and also to mix formula in safe water for him. Never mind the need for power for the pump for 3 feeds a day. The battery only lasts for about 24 hours of feeds.

And as if we needed yet another reminder of life's impermanence our town was shaken by a quake last night. Not a bad one, the kind we often get and it was more noise than movement. But I panicked. I don't normally. I'm good in an emergency as a general thing - just two weeks ago our fire alarms went off for no apparent reason in the middle of the night. P went off to see what had caused it as there was no smoke smell and I executed a text book evacuation of the younger two, incl unhooking T from his pump in record time and getting them out.
But because of the death and destruction in Christchurch and the expectation that our town will be hit by a severe quake sometime soonish it was way scarier than it should have been.
Useful lesson learnt though was we need a torch that works in the kitchen and that some child has purloined one of the torches in a bedside drawers - I thought they didn't know we had them there to prevent exactly that happening.

Those are the literal earthquakes.
But there are other life altering earthquakes which can turn your life upside down.
There are emotional earthquakes as well.

The end of last month was my little micro-prem nieces' due date.
My heart breaks when I think of them and their so short lives.
My heart breaks for their parents' empty arms and broken hearts.
As usual the distance between delivery date and due date is a stark stick in the sand showing clearly the gap of lost gestation and lost opportunity.
Granted the twins' gap is so much larger than any of my children, but the lost gestation, lost opportunity and lost potential are in someways clearer because all of my children live with the impact of prematurity through their everyday lives.

It's the age old thing - is the loss worse because they are absolutely gone, or is it worse to have to continue on with the impacts everyday.
The battle was fought courageously, intensely and then lost for the twins.
But as I write, I was supposed to be doing an annual Needs Assessment for W, I need to chase N with more Fortisip as he was looking green due to lack of eating, and T is currently hooked up to his pump and has been in and out of tears all day due to higher pain levels today.
For them the battle continues to rage, maybe not as intensively, but more enduringly.

I have just seen a paper written with a strong research base which shows some of the longitudinal impacts for kids born prematurely. It looks at the full cohort of prematurity - naturally with a focus on the extreme premature child as those impacts are so much more severe, but also at the 32-36 weeker inclusive grouping.
It makes hard reading, but validating. My kids might be 'late prems' but none the less people are now studying the impacts of that lost gestation too. The battles they have faced and continue to do so are not because I'm 'looking for trouble', not a good parent or any other justification but fallout from their early arrival and less than optimal conditions inside me.

Other earthquakes in our lives recently have been the two crucial appointments for the younger two children.
N has seen his paed and the eating disorders doc. I know and I'd be an idiot not to know, that N has a real problem eating. I've always called it a feeding disorder - one of the dirty dark secrets of the prem world, that when they strike they can be really hard to get rid of and that late prems (if they develop one) can be just as badly affected as micro prems.
But N's paed called it an eating disorder. As she said, it's not anorexia or what we think of when we talk about eating disorders but still an eating disorder. Apparently N has his own little diagnostic box - as he doesn't fit in any category.

After a hellish week trying to force N into eating we abandoned the efforts due to the exponentially increasing stress levels on everyone in the family but N in particular. When the kid is crying in his sleep and calling out that he can't eat something - all while tucked up in his bed, when the kid is so stressed he is biting himself, throwing tantrums left right and centre, and so stressed he's getting almost sick with it then it's time to blow the whistle.
This is not the way I want to parent, all professional evidence points to the fact that force feeding is not the answer to this kind of feeding problem anyway and can actually increase the problems.

N's paed believes he will just get it together with peer pressure, esp in his teens.
She has said that he cannot go to school on Fortisip alone and we want him to go to school for Intermediate (next year) so she has said he has to be eating lunch by then.

As her recommendation is NOT to admit him to hospital for this intensive program (apparently targeted at anorexic teens) we now have her permission to feed him 5 Fortisips a day and up to 6 if he's not eating his usual amount. The 6 will give him his total calorie needs and so hopefully avoid the behaviour problems we have seen when he doesn't eat. The the past week and a half I think he's only had 5 Fortisips once. Many days he's only had Fortisip at all.

We do go back to see the eating disorders doc in 6 months so we'll see what she says then.

And so the tunnel has lengthened once again. But at least we now have a way to control the behaviour which was causing so much distress to the whole family. There's still no real help or hope in getting him to eat other than wait and hope he develops hunger - hard to do on a litre of thick shake equivalent everyday.

And our lives, hopes and plans have been thrown into disarray for T too.
We saw the gastro for him the other week as well.
Essentially they have no idea what's going on. They acknowledge that something is definitely wrong which is reassuring in it's way and that they have seen a few other children like T in the past.
But there is no magic wand, no answers and only guess work.
The current theories are delayed gastric emptying - or dumping syndrome (rapid gastric emptying!). Yes, they are complete opposites!

We are trialing another gastric motility drug at the moment, and like the last one seems to make him worse. He is regularly in pain, retching, sometimes very violently with his feeds, tired, sore and grumpy. And then 30-45 mins after a feed or eating something he's fine again! But often the background pain levels remain.
If this med doesn't help after two weeks we double the dose and then after that try the two meds together.
I'm not looking forward to that at all.
They have no ideas about pain management or a way forward.
They think it's just a matter of time and he'll 'grow out of it'. That grow out of it is physically - longer gut length etc.
Growing is hard when you can't eat properly - and their time frame is years not months.

So I'm going to book T into the surgeon as he's been running most of this and see what he can suggest for pain management. I see the dietitian at the end of this month and I'll see what she suggests in terms of adaptions to his feed regime. If he's got delayed clearance then rapid feeds during the day probably aren't a good idea - if it's all sitting there no wonder he feels sick. If he's dumping it all from his tummy into his gut then again that plays havoc with the blood sugars and other things and could explain the retching, feeling sick, dizziness, needing to lie down after a feed etc. And if it's rushing out of his tummy a fast feed also isn't a good idea!

So apart from looking at years of tube feeds to come, I'm looking at the distinct possibility of him being hooked up to his feeding pump for much more of everyday.
This will turn many options for everyday life upside down and make us more homebound than previously - and no clear hope for a break from it.
We will now have to look at schooling options for T - Health School which can be the referral point into Correspondence School is probably the best option as his pain levels and variability make it impossible to get him into an ordinary school and at an ordinary time.

And so this month has been full of earthquakes - literal, emotional and in terms of changing the fabric of our everyday lives. Various hopes have been snatched away, tunnels lengthened, more adaptions need to be found.
We will get there.
The human spirit is resilient.
These personal disasters are not as large as the devastation and loss of life in Christchurch.
But they are ours and huge to us.