As hope fades

I'd thought of a post on being stuck in medical limbo - again - waiting for doctors to finally do something.
That's what I've been writing in my head for the last month anyway.

But just yesterday all hopes were dashed.

P has been saying for some time that he'd given up hope N will ever eat properly again.
He'd also been saying that the surgeon won't do anything when it came to the crunch.
I'd stayed optimistic - if I give up on N then there's no one believing in him, no one pushing forwards, trying, hoping, praying it'll work out in the end.
I'd also believed in the surgeon - he said he'd try a naso-gastric tube trial in September when we saw him, he'd called me at home twice to discuss where things were at, the hospital teacher had called me as well on his request, when N was in hospital for suspected appendicitis early in November we saw him then and as recently as 4 November he said he'd admit N.

We happen to see him socially as well and he'd chatted informally with us, happy and smiling.
I said to P that he's a straightforward, honest guy and he simply wouldn't behave like that if nothing was going to happen for N.

So we put our lives semi on hold. P pulled out of a Christmas concert with the prospect of N's hospital admission, I juggled round the kids' schoolwork and sorted out ways for the household and school work to run with several days out of action.

And nothing happened.
And nothing happened.
And nothing happened.
The paed asked us what was happening as he'd said to her he'd do this trial - we said we didn't know.

Finally I asked the GP to write a clinical account of how N was during his last retching/headache/vomiting/nausea episode since it was the first time she'd seen one and definitely there was no other cause for it other than his not eating and drinking. She said she'd do one better and ring the surgeon.

Our hopes raised.

And were dashed.

She called me back and said the surgeon has categorically told her he will not even do a trial never mind put a tube in. If N was on the 3rd centile and lethargic all the time then he'd consider it but the international studies said that while it might help it might make things worse and the risks of the surgery outweigh the benefits. He recommends seeing an educational psychologist. We also got the tired old story of time and puberty will make him want to eat.

And so there is no more hope.

N is on the 3rd centile for weight - and static so will naturally travel further away with time.
He doesn't have the stamina to do a full 3/4 hour swimming lesson.
He can't drink large volumes at a time - the surgeon says this is because of his nissen (the reflux surgery) working properly - and so needs smaller volumes frequently.
He has these episodes around once every 3-4 weeks. By my count of events recorded in his food diary he's had 39 acute days between January and end of November. That's not including the day each time it takes to claw him back from it, or the times it started late in the day or in the morning and I managed to get him to drink enough to ward it off. So it'd be easily 80 days a year affected by ill-health due to his eating.
Days he'd be unable to attend school.
The kid's bright but not that bright that he can do a year's school on only 3 out of 4 terms.
The paed has already agreed that the way things are he is unable to go to school anyway.

Puberty is largely affected by weight (see fact weight is static!) and he's showing no signs at nearly 11. It's quite likely he'd be late going into puberty anyway so by the time he's 14 or so the non-eating habit will have been going for 7 years. Real likely that a habit that well formed will just change miraculously by itself.

I'd love to see international studies dealing with N's unique cluster of issues - ADHD affected eating, appetite suppressant meds at the same time as eating causing pain, extensive reflux history impacting on eating when younger - and what they say about the use of any kind of supplementary feeding.

I have no concerns about his academic ability, never have had.
Only the impacts of not eating has on his behaviour and ability to learn.
Telling us to see an ed psych is about as much use as telling the parents of a child failing to learn because they are hungry and parents can't afford the food to see an ed psych.


We often smell ketones on his breath due to lack of calories and he's complaining he feels his heart skipping beats at times when he's not eating/drinking much. I hate to think what the long term health consequences are of this for N.


And so, we'll have to increase his Ensure volumes. He roughly needs 2000 cal a day and we've been supplementing to 1500 but his weight is static and everything else also says he needs more.
We haven't increased until now because drinking 2 litres of 'milkshake' a day will totally kill his residual desire to eat.


But we have no choices left now.
There is no hope now.

The surgeon said he would only consider a tube as a last resort - what else is there for us to do?

I still remain of the opinion that I can get him eating again if I have the right tools.
But I have just been denied that.


And so we have made a paed appointment for N.
Not to discuss what progress he's made or where to from here
No, the time for planning to get out of this mess has gone.
We are simply going to have to tell her where we are at - and give her the forms for N to do Correspondence School funded through Health.

All that hope, those dreams, the planning are gone.


There is no way forward, ladder out of the hole - just deeper into the abyss.




I feel betrayed - betrayed by the surgeon who didn't even have the courage to tell us to our faces, explain how his decisions can change so radically in 24 days when the clinical picture hasn't.
We did everything he asked - bloods, x-rays, endocrinologists, adolescent health specialist (total waste of time) and above all waited for things to improve.
He took a risk in T's care - and wrought something which was nothing short of a miracle - but won't even try for N.


Paeds, paed surgeons, GPs - they all get to sign off on the kid's care. We never get to sign off on the duty of care for the kids.


My beautiful, bright, bubbling boy, so social and engaging, who would thrive at school given the right supports and tools - cast to one side for what are incomprehensible reasons.


The fight is over and hope has gone.

All you need is....follow through!

Here in New Zealand we have our General Election tomorrow.
There are a lot of issues on the table for us all to consider and, of course, a lot of promises have been made by politicians.

But one thing which, it strikes me as having been a problem here for a very long time, is nowhere to be seen.
It stands at the heart of so many of the issues affecting the country, the systems, us all.
And that is - follow through.

There largely seems to be none at all and where it does chance to happen it's usually due to other factors forcing it to occur.

On a nationwide scale - it doesn't matter what side of the argument you are on with regard to National Standards (a new assessment tool here). The major, underpinning flaw is they funded the implementation so finally we (as parents) have a clearer picture of our children's achievement but not any remedial help for those identified as failing.
Follow through people??


They introduced a 'developmental' check for 4 and a bit year olds to try and identify issues before they started school. But the vast majority of 'assessors' are simply Plunket nurses picking up an extra string to their bow but, in my and anecdotal experience, many have very little knowledge on which to base their assessments eg the Plunket nurse who told me - and wrote in W's book - that he was meeting all milestones even though she also wrote down he was getting Early Intervention help at the time. He'd qualified for OT and physio help because he wasn't meeting milestones!
This system has been put into place as a crude screening tool and then concerns are referred on to experts - but the experts are under-funded anyway and thanks to the surge in possible referrals the wait is now around 18 months in our town. Since that'd take a kid to nearly 6 years old the whole 'before school' thing sort of gets lost...      Where's the follow through?

We have a horrible record for child abuse in this country. I'm not sure of the current stats but we'd have over 100 kids die each year due to child abuse.
There was a case recently where our Child Protection people knew of issues with a family and were actually trying to remove a child from the family's 'care'. However, somewhere along the way they 'lost' the family and couldn't find the kid. They couldn't find it, until it turned up in a hospital with brain injuries and later died.
Where's the follow through on that?

Some people will know my vehement view that if we are going to have good neonatal care in this country then we also have to have extra funding for Early Intervention, special education, extra health needs and so on. If we are going to spend the money on the babies then we have to follow through and spend the money on the children they grow into. Hopefully if we spend the money on the children they grow into then we won't need to follow through and spend so much money on the adults he children grow into.
This is particularly so for those moderately and mildly premature children who, with a smaller, less intenvsive or at least less prolonged hand can streak on past or round their roadblocks. These are the kids where there is never a debate about giving them the NICU care in the first place and so they, and their parents, always have to carry the can.

We had a discussion with the kids' surgeon about N and how his eating and formula volumes are a large part of what's holding him back from school. One of the things that was thrown about was that it's unethical to do something for the child just because another system won't be flexible enough for him.
Actually, I feel what's unethical is the fact that so much money was spent keeping his brain in a good state in the NICU, supporting him as a baby, keeping him alive when he wound up in the ICU at 6 months old, giving him some Early Intervention when he needed it and now we run into roadblocks trying to get him to school and a suitable education for that brain to use, grow, develop and actually do something with!
Again - follow through?

And on a much smaller scale - T was getting SLT when he was littler. Due to the vagaries of the system he had to have a hearing test, then go on a waiting list to be assessed to see if he'd qualify for SLT and if so then join the next waiting list to actually get therapy. So I duly did the hearing test - quite a mission it was too! Then I got a letter saying we hadn't shown up for the appointment! Since we'd been there for over an hour and seen two audiologists in the end I wrote a strongly worded letter to the hospital and asked for a copy of the results to be sent to me as well as the GP. If  I didn't have the report when the SLT came then they wouldn't do the initial assessment. So I got the report just in the nick of time for T's assessment which I refused to miss because the hospital couldn't organise itself as we'd waited over 6 months to get to that point.
T qualified and 3 months later started therapy. The therapist left but did a good handover to the next one. She was often sick and then disappeared. We later got a letter saying she'd quit and as T had had over 6 months of therapy he would go to the bottom of the waiting list again. We rang and complained that actually he'd been on the books for 6 months but had only had about 6 sessions due to illnesses/cancelled appointments and had already been nearly 2 months without therapy and we didn't want him to go to the bottom of the list again. They checked their records and confirmed what we'd said and as soon as they appointed someone T re-started therapy.

But again it's the lack of follow through. It shouldn't have been up to the parent to keep records, keep on top of things and events and appointments. They have records too and they should have checked before sending out letter dumping kids.

Things are fragmented. I'm sure they are in every system really.
But follow through seems to be hugely lacking here - and would make the systems work so much better with very little extra effort. Those who are employed to keep track of the people ought to do it not just cross their fingers and hope for the best. The funding needs to be there for the systems to actually work - not just put half a process in and hope.

What this country needs - is follow through!

"Just a cold"

I dream of that day arriving - the day when a cold is 'just a cold'.
It's been about 13 years since I didn't regard the onset of a cold for one of the kids with dread.

My last post was all about long term fall out of being a late pre-term child. That was developmental stuff which has such a far reaching effect through their lives.
But there's another spanner my guys, and many other prem kids like to throw into the works, especially when they are working hard to thrive.

When they get sick they fall fast and hard.

When the boys were all younger a cold meant not just a nasty case of snuffles but usually croup, chest and ear infections, antibiotics, reflux flare up and the resulting weight loss which usually meant about 3 months hard work to get them back to where they were pre-cold.
Things aren't quite so bad these days - for a starter thanks to the wonders of surgery none of them reflux any more!

Whenever N gets sick his eating goes to hell in a handcart and if he's already going through one of his extreme non-eating binges then it happens really fast. Last time T got sick we were lucky to keep him out of hospital and it was really only thanks to his gastrostomy tube and feeding pump that we were able to keep it running really slowly and almost constantly and so kept him hydrated. Big achievement that time as I kept the weight loss contained to only half a kg!

T's doing really well lately and so you can imagine my dismay when he started to sound snuffly recently.
Normally I immediately swing in supportive measures - increase feeds, decongestant meds, pain relief, coaxing tempting titbits of food etc to try and head off the worst.
But this time I wanted to see what his body could do for itself. We're making progress towards weaning off the tube and a major factor in that is being able to cope with bugs without needing extra tube feeds.

So the first day he seemed okay, just congested but happy enough but by that night we were up with him retching due to all the mucus in his system.
Even though none of the kids can actually vomit properly any more after their reflux surgery there's nothing quite like that distinctive retch in the dark of the night to get a parent running a sub whatever second sprint to a kid's room!

T's lucky in a warped way, with his tube we can vent the air out of his tummy which is making him feel horrible - and along with it a certain amount of the mucus he's swallowed can be removed.
So we fairly quickly settled him and went back to bed.

The next night we were up again - to the dreaded sounds of croup. The poor kid was working reasonably hard to catch his breath between coughing and crouping and wouldn't lie down. But the good old trick of extra pillows and lots of calming reassurance worked and he eventually settled and went back to sleep after a round of cold meds and some ibuprophen. I was thrown back into the "Does he need help? What supportive measures do I put in now since he's not holding his own? Why can't this be 'just a cold' for once?" dilemma.

Apart from the fact that W complained he could hear T coming down the hallway that morning as his breathing was so loud he did seem to be managing that day.

The biggest problem with croup in a tubie is that all the pressure from the tummy muscles being used in breathing can actually send the feed backwards - and on occasion with T he's been bad enough to be triggering alarms on the pump because it reads the backwards flow as a blockage!
But he was still eating and drinking reasonably so I decided it was time to play chicken with the cold bug.

4 days into the 'cold' he was still running temps, sleeping at times and propped up on cold and other meds but nothing prescribed, no trip to a doctor and no increased feeds.

He saw his paed on day 6 for a routine check and she declared his chest clear so all the gunk has to be restricted to his nose. His weight was also static but he had been weighed only 2 weeks prior.

We're now around the 9 day mark on this cold. He's still really congested, mood's a bit fragile but through all of this we've scored some firsts -
 - He didn't need to see a doc specifically for any effects of this bug.
 - He hasn't needed antibiotics at all - he often gets a secondary infection round his tube site when he gets sick but that hasn't happened either!
 - He hasn't significantly dropped off in his eating or drinking - this is a major first!
 - and because of the continued drinking and eating we haven't had to increase his feeds at all.
 - while he hasn't gained weight he hasn't lost any during this bug either - a major major first!!

So while he's still sick, got sicker than you'd expect from a 6 1/2 year old with 'just a cold' he's come a long way and made some major strides - one day, maybe, we really will have 'just a cold' in the household!

But in the meantime, this is another example of why people sharing bugs drive me crazy. It may well be just a cold to your kid but we're at day 10 and counting with a kid who is still unwell. People blow off the effects of a common illness but to kids already struggling it can really tip them over the edge.

So spare a thought next time you are coughing away - do others really need that bug - and do you know exactly who you might be spreading it to?
It won't be just the kid who gets it either - kids are generous...I 'm coming out the end of it too!

A Month for every Cause

It seems these days it's hard to find a month which isn't awareness month for something, usually they double, triple and quadruple up.

I remember a time when it was unusual to have an awareness month for anything and it really meant something.
Some conditions don't have big international organisations to co-ordinate World blah Day, week or month.
And so they get lost in the wash of Breast Cancer Awareness, things for prostate cancer, even arthritis or blindness. The competition for a ribbon colour has gone crazy as well - different shades of blue for different conditions for instance.

There is one awareness month which largely relies on word of mouth. It doesn't have an international organisation, it doesn't have a snazzy ribbon you can wear with pride, it doesn't sell specially coloured everyday objects in the supermarket to fund raise for research, support or awareness.
I don't know if we even mark it here or if it's much more of an American thing but, in the US at least, November is Prematurity Awareness Month. Unofficially purple has become the colour for prematurity. There isn't a ribbon as such but a number of people have a specially made pendant with a heart shape on it. It's the Preemie Purple Heart. It's not a New Zealand symbolism that we come to easily and is very militaristic. Of course, here in New Zealand we also don't award Purple Hearts as the American military do. They award it for bravery and injuries received.

While it's not our imagery here it's incredibly appropriate.

Prematurity leaves babies fighting for survival.
Prematurity leaves babies fighting way beyond their birth and infancy.
And Prematurity leaves scars, battle wounds if you will.

Sometimes those scars are visible surgical scars, other times it's minute brain damage, tiny changes which play havoc with their development, some times it's the re-wiring of the sensory system or damage to the child's lungs which they carry for ever. None of those can be seen by the naked eye but they are there nonetheless.

Prematurity is a common and wide-ranging issue. The best stats I could find say that globally between 10 -12% of all births are pre-term - that is before 37 completed weeks of pregnancy.
For New Zealand - we're doing better than the global average - we have between 6 - 8 % of all births each year are pre-term. We are also ahead of the pack generally in terms of survival rates as well.
But it has to be remembered that even at the 32 - 34 weeks gestational age the survival rate is around 95%.
Of course that's variable up or down depending on all sorts of things - complications in the pregnancy, size of the baby, complications in delivery and so on. But the fact remains that around 5% of babies born 6-8 weeks early won't come home with their parents.

And the gestational age where we've seeing the biggest rise in premature births is the 32 - 36 weeker bracket.

There's a lot of evidence and information out there about the battles, disabilities and difficulties micro and even a little later prem babies have. It's not been interesting enough until relatively recently to research the effects of prematurity on moderately and late pre-term babies.

We were all told to take them home and treat them like a full termer, catch up by 2 years old, no lasting effects and so on.

The evidence is mounting that no prematurity is really benign - some kids are simply lucky. Some of those 'lucky' kids actually have damage they simply managed to function round and no one would know it was there until tests were done for some completely different reason.

But here are some stats I've found on the 32 - 36 weeker cohort. Much of this has come from research done in the last few years at National Women's Hospital in Auckland so it's pretty up to date - and New Zealand relevant.

If you are new to the prem baby/child game then think first before you read this.
If you have a late pre-term baby/child think how you are placed first before reading this.
If all you know about prem babies is that they are cute miniatures of full term babies (as I did, once a blissful moon ago) then please do read on!
Prematurity is not an excuse - it's a reason.

32 to 36 weekers (and that's measured to 36 weeks and 6 days) are 3 times more likely than full termers to have CP diagnosed by aged of 5 1/2 years.

They are also 3 times more likely to have a developmental delay diagnosed by 5 1/2 years.

They are 1.6 times more likely to have an intellectual disability.

They are 5 times more likely to have ADHD.

Their maths and reading scores as assessed by teachers is worse than full termers at Year 2 level.

Their participation in Special Education supports is higher in early levels of school.

They are 1.5 times more likely to be blind, deaf or have a seizure disorder.

They have decreased IQ scores.

Schizophrenia, psychological developmental disorder, behavioural and emotional problems are more common - in fact 19 - 21% of 34 - 36 weekers had clinically significant behaviour problems diagnosed by 8 years old. This statistic is similar to both the 31 - 34 weeker cohort and the 25 - 30 weeker cohort.
It is double the statistic for full term children.

High blood pressure, high cholesterol and insulin resistance in late childhood/early teens is more likely in late pre-term children. This appears to be related to abnormal growth patterns in infancy.
The first two years of life are the prime catch up time for late pre-termers and yet they are two times more likely to be underweight, stunted in their growth or even suffer wasting.

What the researchers don't say is that particular stat is due to the huge numbers who have feeding problems - even beyond the typical prem baby issues with tiring, poor suck etc.
Reflux is endemic in the prem population which can lead to feeding problems, sensory issues can lead to gagging, texture issues, oral sensitivity and finally food aversion.
Again when the incidence of feeding problems in late pre-termers is looked at, if it persists beyond a few months old then it is often as severe, persistent, serious and needing as intensive treatment as it would for a micro-prem.

A large reason for these impacts is that their system is immature, unprepared for the sensory assaults of light, sound and being handled. But also a significant reason is that in those last 6 weeks of pregnancy critical brain development is taking place. Btween 34 and 40 weeks gestation the cortical volume of the brain increases by 50% and the cerebellar development increases by 25%. In late pre-term children there is evidence of the white matter of the brain being decreased in volume even without evidence of a brain injury so this important development is being disrupted by the premature birth.
That's why our kids are 'wired differently'.

Now all that sounds horribly depressing - and it is.
Our kids are never really out of the woods because with the high blood pressure etc they re at much higher risk of chronic health problems as adults. Some kids appear to skate through their pre-school and even early school years and then the organisational, the executive function demands increase and the skills just aren't there and things start to fall to pieces, leaving the parents wondering where they've gone wrong because they thought they'd escaped the evil clutches of prematurity.

But all is not lost.
Those who read this blog regularly know that despite it all my boys are doing fairly well in their schoolwork, they are happy, exploring and living life as best they can.
They have some huge challenges but with our support are rising to it.
The trick is - knowledge is power.
Knowing what the risk factors are and employing watchful waiting. Don't expect every part of the preemie alphabet soup to befall your child, but, if they start to show issues then jump for help sooner rather than later.
Know how to find support and make sure you get it.

It's a roller coaster ride with many twists and turns, raising a premature child - but remember, the highs are there right along with the lows and I find, knowing how deep the lows can be also makes the highs all the more sweeter.