We have a surgery date for T!!!

T is having his reflux surgery on the 3rd of Feb 2009!

When we turned up at the surgeon’s appointment his opening statement was – So you’re here for the surgery then? Guess so, Then I want to place a gastrostomy as well! So he will get the feeding tube or g-tube.

Talk about blow you away! P was settling the older two so wasn’t even in the room for that exchange!

T has dropped below the 3^rd centile on the charts – so seriously Failure To Thrive. Depending on what chart you look at he’s actually now on the 1^st centile. He gained 500g once the Polycal was added but hasn’t gained since and basically he doesn’t eat or drink enough to sustain himself and thrive.

So he is simply surviving on artificial calories, added vitamins, iron etc and huge efforts every day.

The operation will temporarily reduce the size of his stomach so that’ll affect his intake, he’s only able to have liquids for 6 weeks post op and so affect his weight dramatically – and then we have to work with all the learned behaviour of eating hurts so you don’t do that!

We’re still struggling daily with N on that front and our experience with W is that this is not a quick behaviour to break – W took 2 years to be able to eat enough to do without high calorie formulas. So T is in for the long haul here – and the tube will be there until he can do it himself.

The game plan is to do overnight pumped feeds so that he has the opportunity to get hungry and want to eat during the day – but with the safety net of being able to pump in all he needs over night. As I understand it, the process of weaning off tube feeds is that he has to be able to eat enough to continue to gain even through sickness – or at least he doesn’t lose ground then and is able, once well, to resume normal eating! As he improves his daytime eating we can reduce the amount he gets overnight.

I’m mentally planning for this to take about a year – working on the older two’s performance! He may astound us all and be done quickly but it certainly won’t be a couple of months – 6 probably minimum (with essentially two taken up on liquid only diet so you can’t start working on solids!).

Apparently the ‘button’ they put in is pretty much flat to the skin and just has a top you open to give feeds – the pictures I’ve seen look rather like the valve on a blow up ball! So it shouldn’t actually stop him doing any normal activities, incl swimming and gymnastics if he wants.

So we’ve been scrabbling round to find out about pumps, tubing, syringes etc and finding out who you are supposed to ask to organise it! Thanks to people going on holiday around this time (and now having 3 weeks annual leave) time’s incredibly short to actually get it sorted before surgery. What we can’t sort now will largely have to wait until the week before surgery!

So it’s all a bit scary really – having been decided so quickly in the end – although being in the wind for ages. I really thought we were just going to be stuck in this awful situation for ever. So I’m trying really hard to see this as big progress for T, his wellbeing and development – but it does feel rather like I’ve failed in one of the most essential tasks of parenting – you can’t get feeding on a much more artificial basis really!

But, if we’re going to put T through this we have to use it to the best possible ends for him and make the absolute most of the situation – I can tell you he’s not having it out only to have to put it back it – it’s going to wait until we haven’t used it for a bit first!!

Huge decision made and I only hope to God it’s the right one. But it was first suggested in Feb this year so been delayed, and P is now convinced it’s the right move, which he wasn’t 5-6 months ago so that’s all important to. Life shouldn’t change too radically in day to day terms and only get better for T. He might even have enough energy to go to Kindy!

I do feel bad about taking this option – the maybe if I’d tried this, done that, given it a bit longer – keeps coming at me. But, also although I’m relieved, I know the war is far from over and we still have a long way to go – but at least Thomas will be safe now.

And although it’s taken a year to get to this point, at least P is now confident that this is the right thing to do for T. He wasn’t before and it’s important we take this huge step together.

He was playing it down the other day – “just a little surgery” etc and I pointed out this is actually a huge step. We’re not just doing major surgery and messing with his anatomy like we did with N, but we’re also leaving something IN THERE! He’s going to be fed in about the most artificial way I can think of!

It’s a hard decision really – but I’m pulling myself together again and getting my head round it I think. It’ll be hard again when the equipment arrives, and of course the day of surgery. But at least he’s had an anaesthetic before with his gastroscope so I know he’ll do okay with that. Although that was 10 mins under or so and this is nearly 3 hours!

Just back from the dietician who has hooked us up with the community nurses and said as soon as he is home from hospital she’ll email with a feeding plan. She wants continuous feeding of 1000 – 2000mls a day! T drinks a max of 700mls total on an exceptionally good day! But she says she’ll work with what T and I feel comfortable with. Certainly I’d expected continuous feeds for a while post op – but the volume!! However his height is between the 5^th and 10^th centiles and weight below the 3^rd so she says we need to get weight on him as a top priority. She also acknowledged his long history of reflux, pain and eating problems – about $%#$%ing time!!

So pump hire and training is pretty much booked for the end of Jan, the dietician’s on the game plan, we’ve met the homecare nurse, the surgeon and hospital’s booked for 3 Feb. We’re getting the Infinity pump which everyone says is the best, it’s summer so we don’t have to worry too much about tube access through t-shirt and shorts – that’ll be a problem for later…

So as P said, time to sit back for a bit and enjoy Christmas!

Merry Christmas Everyone!

Update Soon

I am around and will update on the boys soon - lots happening and we even have a date for T's surgery and an end to the feeding nightmare!

Maybe the begining of the End?

It's been a while since I posted but we were waiting for appointments to filter through the system...
N saw the feeding therapist and ate everything in sight just fine. She said she'd write up the appointment but nothing's come through .
Who knows where we're going to with him!
I just want to get him to the 10th centile and leave him alone! He was happy and healthy on the 10th so why can't he be there? Trying to get him on to the 50th is just going drive us all nuts!

We're trying to work on his behaviour and supposedly still juggling meds but somehow we fell through the cracks and he got discharged and transferred without us knowing or the GP knowing!

We're sort of getting that sorted - I'll know what's happening on Monday afternoon.

I was going to post on T's appointment this afternoon but N is being impossible and W has just had another dizzy spell - maybe NOT the begining of the end after all!?

As happy as a sand boy...

T, like most kids, likes to dig...
Our old house had a huge section and we allocated an area where the boys could dig to their hearts' content - we did that after W got into digging and the lawn looked we'd been attacked by moles - there are no moles in New Zealand!!!

The house we moved into last year is mostly concrete with some small pebble gardens, and yes, we have had pebble fights! They, oddly enough, stopped when I decided that the boys had to pick up every single pebble which was over the path - after spending most of a day picking things up several times over they decided pebble fights weren't THAT much fun :-)

We're trying to grow some plants and veggies in the little garden we have here and T has got into the spirit...sort of...
I eventually threw out the poor plant after T had dug it up 6 times and we'd replanted it 5!

So before we launched into our veggie garden we decided it'd be best for the plants if T had somewhere appropriate to dig. We are now proud owners of our first sandpit! And T is as happy as the proverbial sandboy :-)
He has learnt not to rub your eyes when your hands are covered in sand - only did that once!
But what is interesting is the way his brothers are very happy to play with him in the pit, separately often as they aren't quite as keen as T for his 2 hour + sessions in the pit!
T can now happily say 'sandpit!' and is very amused to see 'sandpit' in the bottom of the bath after his sessions...
It's great to see him happily doing something so normal!

And the dance becomes even more 'fun'!

You know how I posted about T being turned down by the feeding team but we were waiting to see the dietician from the team?

This long awaited appointment – been waiting 2 months already? He’s on Polycal which is supposed to be monitored by a dietican…

His feeding therapist, who has said she can’t really do anything for T, but suddenly said once he is seen by the dietician she can work out a plan for him…

The appointment was set for 30 Oct, and on the 24^th we got a letter in the mail saying the appointment had been changed – to 23 DECEMBER!!

No reason, just a form letter.

Now, here in New Zealand, this is a total disaster. We don’t just have 10 days off over the Christmas/New Year period. It’s the summer holidays from schools etc and most people take their 3-4 weeks annual leave over this time. Government departments etc basically shut down over January. The hospitals only really do urgent stuff for about 3 weeks over this time. Outpatient clinics are at a total minimum.

So by deferring to the very end of December NOTHING will happen for T until Feb. He turns 4 at the end of April!!!

As P rightly said, since T isn’t straightforward, he’d expect that December appointment to be cancelled too.

T was referred to the dietician in August! He is basically formula dependent and at 12kg or about 26 lb at 3 ½ is seriously underweight. He jumped from 11.5kg to 12kg thanks to the Polycal but isn’t gaining any more and so is staying static again. He’s tired, tearful and lacking in stamina – which affects everyone in the family. He’s gained 500g all year. And we can’t even see a dietician with experience in specialised formulas/supplements etc!

AAAAARRRRGGGGHHHHH! That's how you spell frustration!

Some people have no idea!

On Fridays the boys have swimming lessons and my mother takes them so I don’t have to restrain T from throwing himself in the water!

After swimming she buys them an icecream each. This Friday I had to do some jobs in town so I met them at the pool afterwards. My mother said to T that if he could find something he wanted to eat she’d buy it for him. So he found himself a packet of chippies (potato chips). If you are lucky, he’ll eat maybe 6 on a good day. Often he hands them back to you if you offer them! But there are plenty of calories, fats – and the salt makes him more likely to drink his formula…all good.

He was very slow walking along so the others got ahead of T and I and didn’t see this exchange – a lady saw us making our way along the street and stopped me and said “You shouldn’t be feeding those to a child!”. I was totally stunned and she walked off before I had a chance to come up with a smart reply – but really!

It’s no business of a stranger anyway, T hardly looks obese after all, and if he eats even 1 it’s a huge achievement!

There’s a lot of publicity here about the obesity epidemic, school now check the kids’ lunch boxes to ensure they are only bringing in healthy food – not even home baking is allowed if it has chocolate etc – I’m soooo glad I’ve got my kids out of school before things went totally mad. They are talking about putting extra taxes on high calorie foods here in New Zealand. And it’s got to the point where total strangers feel able to pass comment on what you feed your child in the street!! Obesity is a serious problem, don't get me wrong. I know a passerby on the street won't know T's history - but that's precisely why you shouldn't pass comment. Chips are a treat food - and kids are entitled to treats every so often, quite apart from the facts of T's eating habits!

I was totally stunned – and really angry! T handed me back the packet and refused to eat any anyway – I tried again later and he ate a grand total of 4! Yay for T!! But considering the day to day battles to get this child to eat and gain it was totally upsetting!

So, please anyone reading this - think first before you pass comment on parenting - that tantruming child and exhausted mother might have had a day of it and so not be coping so well, that tantrum from a much older child could be an autistic meltdown or sensory overload, and that packet of chips could be a crucial part of a child's calorie intake!! Help - don't criticise!

Full Steam Ahead!

We had a fantastic day this past Sunday.
Because W has Asperger's we are in touch with our local AS support group - Cloud 9.
Every so often they organise family outings - and on Sunday they had a train focussed one!

With 3 boys we have done trains to death - but this one included a trip on a real STEAM ENGINE!
That's an opportunity you really can't turn down, and besides T is still in the train phase.

So to make a real day out of it we caught the train from home to town and then met up with the group to catch another train to Silverstream where the steam engines were. Of course, nothing ever goes quite smoothly and so we only got a short ride in the train from home before we had to change to a bus to go to town. So poor T missed his favourite tunnels.

We got to Silverstream and walked a short distance to where we were met by a real, steamed up steam engine! We rode the engine to the Steam Museum and workshop where they restore the trains. We got more rides in the steam engine, toured the Museum and had a guided tour of the workshop where we could hear how they actually got hold of the trains and how they were working on them.

T just loved the steam - until he got a good face full! N really enjoyed the workings and W said he enjoyed but didn't really light up until he got an unexpected treat at the very end - he rode in the cab with the engineer and found out how they actually drive the trains. This wasn't a steam train but one of the ordinary commuter trains and so a concrete, real, everyday thing - just as he likes it!

He got the chance, a rare event, because one of the adults with the group knew the conductor on the train we were travelling home in. So the conductor asked if any of the kids would like to come up the front with the engineer. All the kids were pretty tired and W said all he heard was the word 'engineer' and stuck his hand up because he thought that sounded interesting! I've been working on volunteering in a reasonable time frame - instead of dithering over whether you want to or not, will something better come up, do I dare risk things etc - so it was a great chance to not only use that but also to show what cool things can come from making decisions.
W says it was almost as cool as the time he got a proper flight on the Rescue helicopter at the NICU Christmas Party.
W got to stay in the front all the way back to Wellington.

The boys were happy but tired when we got back and T finally fell asleep in the bus in the way home. This was the bus we had to get out of a short distance from home and transfer to a train. I was concerned T would wake and cry all the way home - but no, he was sooo tired he stayed asleep in my arms even as we got out of the bus, walked across an over bridge and got into a train! He woke coming into the station at home and was totally confused as to where he was!
It was very sweet - and to add to it the bus driver said he'd driven buses in our old suburb when I'd caught buses often and he remembered W sleeping on the bus like that!

But despite eating very little T had lasted well through a long and fairly demanding day, N had kept his behaviour together and after his trip in the front of the train W was aglow! It was a great day - toot toot!

The Feeding Team rejects T

I am soooooo frustrated!

I had an inkling this would happen but it’s just so unbelievable!

T does not qualify for the feeding team.

I just wish instead of this fight I was just banging my head against a brick wall – because then I could stop!

I should be pleased that he doesn’t have enough wrong with him to qualify but I have run out of options here and I can’t stop this slow slide downwards that he’s going through right now. He had 1 ½ mouthfuls of meat for dinner last night and has had 2 bits of brownie and 400 mls of formula all day – it’s 2:30pm.

So now we try to get to see someone through the mental health team (whenever they can fit him in) but I just can’t see a way out of this mess, largely because he’s still in pain despite his meds. He’s waking multiple times a night and Peter and I are exhausted.

I don’t even want to see this dietician later this month – unless someone can give us _real_, _practical_ advice on getting him to eat then it’s all going to be a total waste of time. The GP has said she only wants him weighed once a month – unless he starts to lose!

This is all such an impossible mess and no one seems to want to or be able to help. I just want him to eat properly and be sure he’s getting what he needs. Boosting calories is just a bandaid – but so long as he’s gaining no one seems to care _how_ he gets it.

I'm just tired of this all...

We did our 2 weekly weigh in with the GP on Friday - the good news is it looks like T might have gained 300-400g.

The proviso is that it was a different time of the day and it's still under 12kg but higher than it was. He was higher than 11.5 2 weeks before than so he's at least a fraction up now for a month.

We discussed his retching, spilling, reluctance to eat and his spitting out food - and then he spat out his highly desired jelly beans, all over her floor...
She agreed that it is NOT an attention seeking behaviour.

We're now trying to prop Thomas up on pillows in his bed - in the hopes he'll sleep better and STAY in his own bed. We've noticed that he comes to our bed, settles himself virtually upright and promptly goes to sleep, only to wake once he slips down again.

Saturday I gave him his omeprazole (aka pizza box medicine!) and his customary sweet as a reward for taking it - and he spat out a part chewed jelly dinosaur. I can't even seem to feed this child sweets any more.

He had his hair cut on Friday afternoon and the hairdresser and I were chatting and we were talking about food, eating etc and her comment was I just had to try harder to get him off bottles and eating properly. Yeah, and if it were that easy do you not think I'd have achieved this by now??

I went to work on Sat morning, after T had spat out his dino, almost in tears. I nearly popped in to see the hairdresser to tell her of the morning's events. Yeah, sure, he'll eat if I just try harder - but I can't even get him to eat a sweet any more!!
I came home after work to discover that P had had lots of visitors who had all been coffeed, caked - but the younger two actually eat? Um, no. The initial refusal they give to food had been accepted as the final word on the matter!
Needless to say a detailed description of how hard you actually have to work to get the younger two to eat was delivered - and maybe he has a little understanding of what I actually do with my day!

Anyway, the GP has also found out what I have about the Feeding Team and so she's going to do an urgent referral to them for T. We have to chuck everything we can possibly think of into the referral in the hopes they will deem him meeting the criteria and be 'allowed' in. If they decide he doesn't I don't know what we do to get him to learn to eat!
It's nearly October now, it'll take a couple of months probably before he gets to see anyone so nothing'll happen on that front until next year thanks to the big summer shutdown.

But I despair - how are we going to persuade him to eat when he's maxed out the meds and clearly still symptomatic? I wish we hadn't opted out of surgery - that was really the wrong decision and I was uneasy about it at the time. Never mind - at least by the time we see the paed, get back to the surgeon etc he will have well and truely done his suggested 6 months on the omeprazole and so hopefully the surgeon will be happier to work on him.
I just can't see any end in sight with this - and after battling eating problems with W, N and now T we've been fighting this monster for over 10 years - and I'm battle weary.
I don't know how this is going to end - but I'm NOT looking forward to meeting this dietician. Never mind, I've got to hope for the best...

Time Ticks on

Okay, let me start by saying I'm frustrated.
Nothing's happened.
That's in part why I'm frustrated!

I finally got hold of the speech therapist helping with T's eating earlier this week. She was very positive about the fact that we've changed dieticians. Apparently this new one is on this mythical 'feeding team' I've caught whispers about - and yes, we have missed on a referral to the team.

Get this - it's part of the Child Development Team and you have to have more than 'just' feeding problems to qualify! It may be that because T is speech delayed he might make it to the criteria. Well, the obvious answer is let him starve, let his development lag and then, hey presto, he'll qualify for the help he desperately needs and with the help his development and possibly whole future wouldn't be endangered.
Obviously I wouldn't ACTUALLY do this - but the situation is ridiculous!

We discussed T's relatively recent increase in pain, gagging, spilling etc and she seemed to think he's doing for attention - so why does he wake in the middle of the night, come to our bed, get propped up high on pillows and promptly go to sleep until he slips down?
Why has he slept through without waking us when I give him pain meds as we go to bed?
Why does he spit out food when no one's looking in a corner and doesn't bring attention to it? Why does he say 'tummy hurts? Food too heavy?'
It's not like I then go jumping up and down, fuss or give him huge cuddles and anything he wants. It's 'Oh, dear, give it a rub, never mind'.

She said that the new dietician will 'have something to say' about T's brownie intake and that we need to cut it. I have to feed my kid something! This is ridiculous - now I'm to be criticised for ensuring he gets some kind of calorie intake??!

So I tried an experiment yesterday and refused to give him cake unless he'd eaten a couple of mouthfuls of bread. This is a kid who had had only 200 mls of formula all day at that point so wasn't full on that, had had 2 bites of bread for breakfast and 1 tiny brownie for morning tea - and it was 3:30pm!!

He refused and wanted to throw his bread to the birds - 'Birds hungry!' 'Birds turn now!'

In the end he put his dummy in his mouth and went away to play. He didn't get anything more of anything before dinner - and ate 7 strands of spagetti and 1 mouthful of mince chow mein for dinner.

Breakfast today, I hear you ask? Um, eventually had 1/2 a slice of plain bread by 9:30 when he'd been up since 5:30...this child does not seem to feel hunger!
Who knows what his weight will be when he's weighed again tomorrow.

Oh and the speech therapist's plan for T's eating - we wait until we see the dietician on 30 Oct! He first saw this woman in late Feb - early April! Still no plan and no improvement.
And so we keep on keeping on - what else is there to do?

Circling the drain again

I don't know. I really just don't know any more.
T's feeding therapist is apparently going to call back on Monday morning - I missed her call on Friday.

I'm going to ask for an appointment, going to get rid of the other two and get P to come too.

I'm persisting in the bottle versus cup fight. It was a battle the first time and he didn't drink much for a few days and then gave in. We're on day 2 of this round. He drank a grand total of 230mls all day. He also ate extremely little. He had 1 mouthful of dinner and basically didn't eat any breakfast. He hadn't eaten lunch or afternoon tea either. Hunger clearly doesn't register with this kid.

Interestingly, and sadly, with the reduced formula intake his behaviour, happiness and activity levels slid right back to where they had been pre-Poly Cal. So clearly the Poly Cal and his formula are the ONLY things actually keeping him on track and he can't afford to slow down on a drop. He really is formula dependent - at 3 years 5 months.

I just don't know how or when this is going to end.
He's clearly still in pain, we can't medicate any more than he is, and surgery's a no go for now.
Feeding therapy is going to be useless if it still hurts - and if we push it now when it does still hurt then when it doesn't he's not going to believe us.

P wants me to alternate bottles with cups as he has to get his formula. I think that's just going to prolong the battle and make it confusing for T. It has to be one or the other.
All the formula T drank yesterday was from his nap time bottle! So he hung out for that. Wretched child.

If I don't see an improvement tomorrow or his energy levels dip right out again then I'm going to give in I guess.
What else can I do?
This is a kid who, given free access to potato chips, feeds them to a dog rather than himself!
He gives you back a lollipop half eaten.
I can't feed him.

Just somtimes this whole thing gets me down. What kind of mother can't get her kid to eat or drink enough to survive healthily and thrive?

I know we'll get there in the end but it just seems to stretch out into never never land.

Putting your best foot forward!

The saga with P's foot continues onward...
The MRI has shown considerable inflamation and so we're doing the same dance with him that we have been doing with T - same meds...again...even though it didn't work the first time.

He's back on anti-inflamatories, the ones which made him dopey - because he didn't think to tell the doc that - for some considerable time.

It's the same old, same old - if it's not improving in x months then come back, it's going to be a long term problem, slow healing etc.

At least with his orthotic in place now - a mission in it's own right, over a week and a half and the wrong sent out 3 times - he's much more comfortable and happier.
But none of these 'solutions' explain the rash he gets coming up and down unpredictably, or the general feeling of unwellness which keeps occuring.
Gee, I LOVE the medical limbo - and now I can do it in two arenas at the same time!!!

And as for T, he really seems to love his current pothole. Yes, he's happy, yes he's energetic, yes he's doing what he needs to do - oh, yeah, except EAT!
His eating went down badly over his run of bugs and it just isn't recovering. He isn't eating much at all, he isn't gaining, and since I'm fighting the bottle battle all over again he's not drinking much!

But what worries me, and I'm definately going to raise with the GP is his periodic complaints of a sore tummy. I have tried to tell him he must be hungry and to get him to eat something but it doesn't seem to help him. The other night he doubled over saying "Tummy hurts!" He was gasping/panting and had tears in his eyes. After I'd comforted him and he felt better he decided, not unreasonably, that that was it for dinner!
Whenever you ask where his sore tummy is he always points to where you'd expect reflux pain.

As if that wasn't bad enough he's just taken to spitting out chewed up food instead of swallowing it! He's done it 4 times over 4 meals now - he shoves probably 2-3 mouthfuls in at once, gaggs and then spits it out on the floor - or fishes it out and throws it on the floor.

I haven't heard back from our GP about where we're at with a feeding team kind of approach, we don't see the dietician until 30 Oct or the paed until 27 Nov.
My feeling is we get him checked out by the GP with these 'new' reflux symptoms, we can't medicate him any more than he already is. So then we wait until we see the dietician - just going in circles until then. There's no point in bringing the paed appointment forward because we need time to try out the dietician's suggestions - I hope she has some!
And we really question where we're going to when we see the paed and possibly go back to the surgeon. The surgeon said to try the omeprazole for 6 months - we're up to 7 weeks now, by Nov we'll be up to about 4 months. Thanks to Christmas and the summer bringing everything to a screaming halt we'll be well over the 6 months by the time things return to normal and can possibly do surgery. The poor kid will be 4 in April - enough's enough!!

Gee, the medical limbo's the most exciting game ever! I'm soooo glad I've been given the chance to learn to do it so well!

T throws a tantrum!

Yes, I know, not usually the kind of thing you celebrate - but, this is T we're talking about!

I was forced by necessity to take all 3 boys out lingerie shopping yesterday. I usually try to get rid of at least a couple of them so I can actually think and choose rather than just grabbing the first thing that I know will work! Anyway T was having a ball running around and swiping items off the stands. His wicked sense of humour has re-asserted itself - it's very hard to discipline a kid who is running up to padded bras and pushing the cups while going "Honk! Honk!"

It was great (although very disruptive!) to see his sense of fun and his higher energy levels in his running. However, especially since his energy is improving, it's essential to maintain control. The boys wanted to go to the Toy Department after I'd finished to drool over the toys they'd buy if only they had a spare $300. So W and N got to go - and T had to stay with me in the Baby Dept next door! He screamed, fought, cried, went rigid and generally packed a major hissy fit! When I went to the counter to buy something I had to put him down and he took off! I excused myself and fished him back - and he gave in after that and was very penitential and sad but knew exactly why it had happened. But it's really wonderful that he had the fire and energy to misbehave!

But while it's wonderful to revel in this we need to keep riding the wave and actually move towards actually sorting him out. His fluid intake seems to have increased and solids intake decreased since starting the Polycal - so on paper this is probably a failure. But if you make him decrease his fluid intake his solid intake doesn't increase and he needs the calories so what do you do?

I'm probably making a bigger feeding problem for us further down the track but right now the improvements in energy, exploration and development are clear indicators he's starting to get what he needs and I'm not going to do anything to stop that and so I'm not going to stop pushing the formula. He's always preferred to drink than eat and at least with the combination of nutritionally complete formula and Polycal he'll be getting a decent diet.

We've got a referral to another dietician who, being part of the hospital, should be able to work closely with the feeding therapist, but we can't see her until 30 Oct so I've got until then before someone throws a major hissy fit about his lack of solid food!
Currently no one has come up with an action plan on HOW we're actually going to get this child to eat enough to actually sustain him and no one is supporting us in the battle. My priority has to be his mental and physical development and the lack calories endangers that. We and he are the only ones who have to deal with the consequences of that and as far as I'm concerned we need to focus on the much bigger long term picture here. I'm sure he'll learn to eat eventually but you can never get back that time and brain development.

I have discovered that there is a clinical psych, SLT and I think dietician associated with the Child Development Unit that is alongside the hospital. I'm not sure if we've somehow got into the hospital system rather than that or if they are one and the same or what the issue is here.
When T goes to the GP for his weigh in tomorrow I'm going to ask which bit of the system we're in, if they are all the same and which might be best for T. He needs a concerted, sensible team approach if we are to get anywhere.
Wish me luck!

And T stands for Tigger!

A bit of good T news for a change!

He's been on the Polycal for a couple of weeks now and T definitely stands for Tigger!
You never really know what you've lost until you get it back again - and I never thought I'd be happy to have a naughty child, but now he has more energy that's what I've got!
He's happy, singing, dancing, challenging, bouncing, exploring and simply fantastic. We'd forgotten what a gorgeous giggle the boy has!

We were at church on Sunday and he normally flakes out about a third of the way through – he was sitting running round and playing games with people afterwards at morning tea. People kept commenting on how happy he was, cheeky and playful and just my Thomas again!

My uncle is in town briefly and so we had a family lunch after church. Normally (as I did a couple of months ago) I’d have skipped church so T could rest and last the party. We went to church, on to the family lunch and he didn’t go to sleep until well after his normal sleep time and didn’t lose it until very close to the end.

I’ve even had to cajole him into bed for a nap! I used to have a kid who would come and find me and ask to go to bed!

He gets weighed again at the end of this week and I doubt he’s gained anything – having watched him running around the church foyer pretending to be a train!

But he’s happy, exploring, doing his needed developmental stuff and delightful to be with! I don’t care too much about the weight if I can be sure we’re feeding the brain anyway!

And we saw the paed today...

Well, we had our paed appointment today.

The GP had printed out all the height/weight info she’s kept and been charting so we could give it to the paed. I also had copies of all his blood work – amazingly the only thing he’s actually deficient in is iron despite being on an iron supplement! There are a few things which are on the low side of normal though. I don’t know how he’s managed to keep his biochemistry in balance over this time of no weight gain/abysmal eating!

Poor T has been and is still sick – had a cold 10 days ago and is still sick. The GP checked him out on Friday and gave me an antibiotic script just in case because he hasn’t got reserves for fighting an illness and it’s just as well because he’s been spiking fevers since Sunday – highest was 39.2oC (around 104F I think). He’s as white as a sheet and barely eating – I’m just pushing the Neocate Advance at him as much as I can! But he looks thinner – he gets weighed by the GP on Friday so I’ll see if there’s any real change or if it’s just fluids due to the decrease in eating and drinking and the temperature.

All the kids have been sick and just to be different W's had a tummy bug which, touch wood, none of the other kids have got! My hands are soooo dry from all the washing as I go between kids but if I can stop T getting a tummy bug then it’s all worth it!

I just needed the paed to take T’s eating seriously and actually start moving towards some kind of a resolution to this nightmare. It’s nearly 5 months of no weight gain and he was on the 3^rd centile before he started this no gain thing.

So acc to their scales T had gained a bit from their last weight which was way out on the last one from the GP.

So we gave the paed the GP’s weights, growth assessment, chart copies etc and she was concerned enough to at least say we have to do something – no, really?!

She looked at his food diary, paged their dietician and got the info to start him on Polycal added to his Neocate Advance. Those two combined will give him total nutrition and boosted calories – assuming he drinks enough of the stuff!

She’s referring him to the dietician with the feeding team at the hospital so she and the feeding therapist have to work together – T's normal dietician isn’t returning my calls any more! She can’t make him eat any of her suggestions so she’s given up!

So the paed described T to their dietician as one of those kids who have learnt not to eat. She wants to see him in 3 months and see how he’s going with the increased calories. The Polycal plus formula should give us a safety net now to actually get a serious team together to get him to relearn to eat. We do still have to fight the reflux monster as he’s only taking the omeprazole solution around 50 % of the time and so we continue with the cisapride. I personally don’t believe he’s going to win the reflux fight and so the feeding fight, without help – like surgery. But if we can get more calories into him then I’m happier to wait, and by the time we see the paed in 3 months time T will have been on omeprazole for 4 months, nearly the 6 months the surgeon suggested!

At least I feel like T is safer. It’s not a proper answer but that’s only going to happen with time and I knew it was never going to be quick. If we can get a dietician to work with the feeding therapist then we’ll get past the ridiculous suggestions of cutting calories to get him to eat. Now T at least should start gaining again and can continue on his development while we play around with everything else.

And when it rains...

My last post gave the saga of W's head...
Since then T came down with a cold - no big deal, except he's not eating much. That's normal enough for a sick kid but T hasn't got the reserves to do that with! I noticed he was puffing as he went about his usual play so he got to visit our beloved GP on Friday. End result, because his temp went back up today - he's on antibiotics.

N's picked up the cold and cough from T but doing well enough on his own.

W - just to be different, has a tummy bug! Probably picked up in the ED waiting room over last weekend but now I'm trying to keep all 3 apart, keep W hydrated, make sure I don't carry the bug from W to the others etc. My hands are getting sore from washing but if T got a tummy bug it'd be a disaster!

P saw a different specialist about his foot this week - probable osteomelytis and needs an MRI to see exactly what's going on. Oh, yes and by the way - no wonder you are having pain on walking - the fat pad at the ball of your foot was dead so they removed it and the notes say you need orthotics - why haven't you got them yet?

He's walking on bone and even when he complained of pain no one read through the notes to see they needed to tell him to get the orthotics...hospitals...

At least there's something positive - N has managed to gain some more weight! He's gained 500g in about a month so the change to the slow release ritalin really is paying off! I know that gain isn't just from his high cal drinks either - we know he's eating dinner better and faster - like in the normal family dinner time rather than over 3 hours and taking it to his room!

When the drains blocked last weekend - yes, the same weekend as we were in and out of ED, - we decided, completely unplanned, to go out to dinner. We had a nice family dinner, no one misbehaved, we weren't stressed, and everyone enjoyed it - and Nicholas even ate everything and got to have icecream! We got home and I realised what we'd actually been able to do - thanks to the slow release med N was under good control and we didn't have to plan the trip out to dinner, extra medication - then he wouldn't want to eat etc. FANTASTIC to have a 'normal' family outing!!

T sees the paed on Tuesday so I'll update after that - hopefully good news to report about actually starting to DO SOMETHING about his eating!

And trying to apply carpet to your head results in...

According to me - the weekend from hell!
According to W - an awful headache and an extended ban from soccer due to concussion!

Thurs morning we were rushing to get out to an appointment (what a surprise - either running late or having an appointment to go to - take your pick!) and W fell UP the stairs. True skill...

He appeared beside me pale, wobbling and telling me he'd seen bright coloured flashes, had double and blurred vision and felt sick - and then proceeded to wretch!

I took him to the doc a couple of hours later (I had an appointment I'd waited 6 months for!) and he got a reasonably clean bill of health but to be watched as he had concussion and whip lash type injuries. Remember he fell UP 1 stair with was carpet covered! W doesn't do anything by halves!
As T had his 2 weekly weigh in the next day the GP wanted to see W as well to check he was improving as expected.

He was irritable, headachy and generally concussed and horrible all day on Thurs. Friday he seemed better, all over the place and very hyper, but couldn't concentrate, although I sent him to piano anyway - mean mother :-)
The GP checked him over and decided things weren't resolving the way she'd like and so called the hospital and then sent us to the ED. This is Friday evening...N was at swimming with my mother, T was tired, P still has problems with his foot and can't walk far and the hospital is going to be crazy - so off we went!

We sat around for 90 mins before getting to see a doctor. She said he had a better than 50% chance of being admitted, possibly needed a scan and the paeds surgical reg would be down at 9pm - so about an hour away. So I called P, told him to take the other two home - and grabbed a biscuit from the vending machine in the waiting room!

I'd had 2 bites when another doctor appeared and told me that he'd done lots of reading about head injuries, and had some experience with them and didn't believe that W needed a scan, or an admission or that anything was more than a concussion and not to worry. Apparently the odds are very small that they'd have missed anything and anything would go wrong - and so I could go home!

So I quickly called P back and got dinner and ourselves home. W was clearly not right - he was half way through a hamburger and got up, got a knife and fork and sat down, trying to eat it with those!!!

We also discovered - finally home, tired, hungry, stressed - that the drains in the kitchen were blocked! Dishwasher, sink and insinkerator all blocked! Our attempts to clear it resulted in yucky water all over the floor which needed a double wash kind of approach. Mopping the floor at 11pm after 90 mins in the ED is NOT my favourite way to spend a Friday evening.

Saturday morning brought us - a kitchen with still blocked drains, fatigue due to waking W 2 hourly through the night, and a W who still had double vision, a headache and then threw up his breakfast and complained his fingers were progressively becoming numb. And so we headed back to the ED!

I'd hoped we'd miss the sporting injuries but got caught up in something much worse! The computers crashed hospitalwide! So they couldn't clear patients being transferred to the wards easily so it took longer to get from the waiting room to see a doctor. We were extra unlucky as we arrived BEFORE the computer crash so W was entered into the system - and then lost.
Thankfully I had a print out of who we'd seen the night before and their findings and so was able to get them to look at that and they didn't need the computer so much for him.
But it was still a5 hour wait before we saw a doctor - and he got a dose of a low grade painkiller and sent home!

Thankfully, W is getting better each day, the drains got unblocked on Monday, the dishwasher fixed today - and we've gone a long way through our stack of plastic plates :-)

Where have I been?

Oh dear,
Another long silence - after all my good intentions!
I feel like I've taken a step back into a time warp I thought and hoped I'd left behind - kid appointments coming out my ears!
I've had couple of appointments of my own to chuck into the mix but things are so like they were when W and N were little - we had at least 1 medical or affiliated service appointment a week for so long...

These days it's 2 weekly weigh ins for T with the GP, 2 weekly appointments with a specialist for N - we're moving his afternoon dose of ritalin to a sustained release tablet (once we've finished the adjustments we'll go back to monthly weigh ins with the GP for N), 2 weekly speech therapy sessions for T, 2 weekly phone calls with T's feeding therapist and we've thrown in a surgeon appointment for T and a paed appointment next week.

Next week, that's going to be a 'take a deep breath and dive in' kind of week - Tues is the paed, Thurs is SLT, Fri is GP and N's specialist. I guess it's a bit better than the other week where, over the family, we managed to have 6 medical or related appointments in 4 days!

At least with most stuff being 2 weekly I've managed to get it all on the same week so we get a gap in between!

Anyway, I'll post an update on T, probably tomorrow!

"Tube out! Big Grrr Mummy?"

Yes, we've done the pH probe!

I am so proud of T and how he handled it all. That kid has real guts and courage. He was even playing happily in a huge cardboard box yesterday evening!

However the night wasn’t so good and somewhere between 2:30am and 6am he pulled the probe out completely.

I checked on him regularly and he woke at 11:30pm, upset but not messing with the probe so I resettled him. He woke again at 2:30am, again upset but the probe was still fine. He woke briefly about 3:45am but as I’d only managed about 2 hours sleep I left him as he only cried a couple of times. So I don’t know if the probe was still in then. T woke and wanted to get up around 5:30 (he often gets up then) but P persuaded him to snuggle back down – but didn’t check the probe.

T got up at 6 and when P flicked the switch to say Thomas was upright he noticed the probe was reading zero and then noticed that he’d pulled it completely out of his nose!

We’re just hoping he pulled it out between 5:30 and 6 when he would have been more awake anyway – he’s got the lovely toddler habit of excavating his nose with a finger and he might have pulled it then. It has to have been in for 18 hours (4:30am) for them to even bother to read the results apparently. If he did it at 3:45 then it’s all unusable and we have to back to the drawing board.

I have stressed to the nurse this morning that we have a surgeon waiting for these results and we need them asap. I told her about the lack of weight gain, his position on the charts and the surgeon looking at a gastrostomy tube. It seems, depending on the tech’s work load that the results could be back by Friday but definitely by Tuesday. So I’ll get the GP to call the clinic then to get the results. If she talks to the paed instead of me she might be able to fix the weight issue where they miss weighed him last time he was at clinic – she clocked him at 12.25kg and the GP’s consistently got him at 11.5kg. That’s too much of a difference to be just scales – and enough of a difference that he looks sort of okay on the charts.

If we have to do this $^&& test again then I’m going to insist they do it IN hospital. The only way we could have prevented him doing this would have been to stay up all night sitting beside him.

Never simple!

And so we got the results back and it seems that T managed to pull the probe around midnight (which I find hard to believe because when he woke at 2:30am I pushed the event button and it shows the pH the machine is reading and it was around 5. At 6am it was showing 0 when it really was out!)

So the doc has said the results are incomplete and has only done a screen dump of the readings with very little interpretation. However – he has said right at the start of his report that T’s previous probe did not show reflux. T’s previous probe was done when he was 3 months old. It was not done correctly – even the hospital paed at the time acknowledged that – in writing. All of that stuff in T’s file is subject to an extensive complaint. T’s current paed says that probes done on very little kids can be unreliable. I know from my own research that pH probes have problems anyway which can greatly increase false negatives.

Thanks to this stupid doc’s comment at the start of the report our GP read it as not showing reflux – while he didn’t actually say that - he didn't say ANYTHING!

The poor kid managed to have 142 reflux episodes over 15 hours. He had 7 long ones and the longest was 17 mins long. He spent 12.9 percent of the time with a pH under 4 - yeah this kid doesn’t reflux??

He ate and drank very little the day of the test so he didn’t even have much in there _to_ reflux! It may be mild reflux – but it’s wrecking havoc on him.

We have to wait until 29 July to see the surgeon and T was weighed again yesterday – still 11.5kg. He hasn’t gained since before 11 April.

The surgeon had better do _something_ because T can’t take much more of this.

On the positive side Thomas has really got into jigsaws and learnt how to do a 25 piece puzzle in the space of 3 days with a little help to start with but has been doing it by himself for the last few days – needless to say I’m buying him some more!

FTT at 3

I don't know if many people are all that familiar with the term FTT.
It's short for Failure To Thrive.
It's a term for any child who is below the 5th centile for weight, height or both. Some things say FTT starts at the 3rd centil, some say falling through a certain number of centiles over x time period qualifies.

It's a nice, clear medical term - and it really hurts as a parent to have your child labeled it.
I know it's just a medical definition and doesn't necessarily reflect on the parents but as a parent your job is to get your child to thrive!

W was described as FTT as a baby and then preschooler due to feeding problems. Once we had a safety net of pediasure under him I could back off the food fight and eventually he came right.

The first time I saw him described as Failure To Thrive I was devastated. I couldn’t manage to keep him inside long enough and then I couldn’t even get him to thrive!!

When the same problems reared their heads with N it still hurt – W had been on pediasure for about 6 months and was doing much better. But at least with N I knew we could get through it with good dietician help.

With T it was hard not to know when he was 3 months old. He was born weighing 5lb 11 oz and at 3 months old was around 9lb 6 oz. He was skin and bone. You could feel his bottom bones through his nappy and I was scared for him.

But we’d done well for about 6 months in the 6 – 12 month range and then did okay until 15 months or so. I knew once he hit the 5^th centile that he’d be officially FTT, certainly once he hit the 3^rd centile.

But on Friday I had to get the doc to fill out some forms where she had to list his dx in order of impact on him and she listed FTT first on the list before his reflux.

That hurt – again. It’s been a year or so since I actually saw it written down, pinned against one of my kids.

You’d think, really, that they could find some kind of term which doesn’t make parents feel like such a failure. Most parents with an FTT child are busting a gut trying to help the kid and really, really don’t need guilt added to it even if it’s not intentional!

Both of the older 2 had lost their FTT label by the age of 3. T is 3 years 2 months and is only getting worse. He has only gained 9 kg in 3 years of life. He is not on the chart, even on the 3rd centile any more. There is no real end in sight for him - and that feels awful! I don't need the FTT baggage as well.

I can do the limbo - medical limbo that is!

Well, a veritable feast of updates lately - hopefully there won't be such a long gap!
Part of the gap was the lack of anything to report - I've learnt a new dance - the medical limbo dance! This doesn't involve going over hurdles, or under them - it involves doing nothing while you wait for things to happen - and they don't!

Poor old T - he saw his surgeon on 29 April (ironically his birthday!) and we got told that because the biopsy results came back normal we needed to do a pH probe test to see how much he is refluxing. Surgeon agreed that his weight is of concern and mentioned a gastrostomy tube off his own bat - and mentioned that to the paed in his letter! So progress at last!
We explained our hesitency to go to a certain hospital and he said it'd be fine to go out of town and that it'd take about a month to organise. Fine, okay, not a problem.

Then he rings back and says he can't get him in at one hospital and he'll try another. A week later we find he can't get him in there and will try a third.

By then we were due to see the paed and she says she can organize it at her hospital and it'll only take a week or two max. She said she'd call the surgeon and talk to him about it.
Okay the max of 2 weeks takes us to the length of time the surgeon said anyway and this way we don't have to go far so all cool.
She calls back the next day and says she's got the surgeon to cancel his arrangements and someone will call me from her hospital.
And we wait.
And we wait.
And we wait.

I get the GP to hassle, no joy.
I run into the paed and ask - oh, the first week in June.
And we wait.
And I get the GP to hassle - who does some serious hassling!
And finally last week we get a call to say someone will call us later in the week - yay, thanks for nothing!

And then we got a call - it's Tues 24 June! They'll put the probe down and then send us home. I have to spend 24 hours trying to stop T from pulling the probe out - and then we'll go back and they'll pull it for him :-)

So we have waited nearly 2 months all up.
In that time T has stopped gaining weight and his eating is as awful as ever. If he was borderline for a feeding tube before he'll have earnt himself one by now! At 3 years and 2 months old T weighs a whopping 11.5kg or 25lb 3 oz!
He was on the 3rd centile for weight and has now dropped well off.
His BMI is now 14.2
I have just realised that T weighed 2.5kg at birth - he hasn't even gained 10kg in 3 years!!

He is seriously underweight and his nutrition is so bad that the hairdresser has pointed out the reason why T's fringe looks so straggly is because his hair is actually falling out and growing back thinner - and then asked what the kid eats.

In our two months of medical limbo T has now missed a June surgery date and a July surgery date. By the time the results are back and we actually get in to see the surgeon he'll have missed an August surgery date.

And so the child will continue on his path of gentle starvation until September at any rate.
He is _not_ the only one about to lose some hair!

However - I've learnt something from the special dance called medical limbo!
When he goes into hospital I'm going to actually check on his file that they write down the results are to go to his surgeon - and to the GP as a back up. The GP has written to the surgeon to keep him up to date and told him about T's stagnant weight.
I am going to find out exactly when the results are expected - and book in to see the surgeon 1 week AFTER the results are due.
I am going to get the GP to chase the results FROM the day they are due, if she doesn't have them, until she has them. Then at least she can fax them to the surgeon if he hasn't got them.

I am not going to just trust the system will work and I am not going to let any more time escape.
T cannot wait any longer.
The surgeon, after any surgical intervention, will sign T off.
At the worst, the paed will sign T off after he outgrows the paedatric level.
We cannot sign off on T.
And T will have to live all his life with any physical, intellectual and medical fallout from his repeated and prolonged malnutrition.
T cannot wait any longer.

And W is 10!

About 10 years ago today probably the hardest thing in my life happened.
10 years ago today I was discharged from hospital a week after giving birth to our first child - and we had to leave him behind.
10 years ago today W got moved out of an incubator into a cot and got dressed for the first time. I helped dress him and move him - and then had to walk out and leave him.

Through part of my pregnancy I had this cute little fantasy of nudging P at some point in the night, "Honey, it's time!" Who knows how many people really get to do it that way??!!

But for me it was all a rush of urgency, panic and total unpreparedness. P was even out of town - W wasn't due for another 7 weeks after all!

I hadn't been feeling great but not terrible either and certainly didn't suspect when I turned up for 'monitoring' with my midwife that in fact I wouldn't go home without giving birth.

But pre-eclampsia is a mysterious and lethal beast and so I was actually seriously ill and both W and I were in danger of losing our lives.

Within about 4 hours of turning up to the hospital W was born and P and I were first time parents to this tiny little being wired up to all sorts of machinery and with tubes sprouting from him. We did actually sit by his incubator later in the week and debate if he looked more like a rat or a monkey - all 3lb 14 oz of him!

It's amazing to think of the roller coaster we have been on in our parenting ever since the initial crash landing. It doesn't get any easier outside the NICU - W behaved himself there!
It was only once he got home at 3 weeks old that the fun started with reflux, apnea episodes, feeding refusal, low weight gains, the wondrous term FTT - Failure To Thrive, developmental delays, Sensory Integration dysfunction, possible mild CP. He went through a stage of collecting diagnoses and I felt like they were stripping my child away from me, what was going to be left after they told me what was wrong?!

Of course I did come to the realisation that in fact the diagnoses didn't change the little boy I had in front of me - except to make it easier to help him. Having made that mental leap certainly helped as trouble rolled in with N, and W's later Asperger's diagnosis.

These days W is a great kid. I was talking to his soccer coach the other day and he was saying you'd never know W had an issue. Then we went to a home school activity and W had absolutely no idea of how to break into a conversation, start a conversation or even play with the other kids. Meanwhile N is racing round talking to everyone and making friends. T ran out of energy and sat and cried - but that's another issue!

As I watched W the pain of watching him struggle at playgroups, kindy and later school all came flooding back. Yes, he's doing well in terms of being happy, rolling with the changes in routine, doing pretty well at his school work, happy in his soccer and swimming, enjoying piano, interacting with family and familiar adults - but throw him back into a noisy, semi chaotic situation where you have to cope socially as well as cope with the lights, noise and movement and he sinks fast. You could see him shut down. So we've found out about a social group run by our local Autistic Association and we're going to sign him up! He has commented before how he likes being with "his people". That hurts me, although it shouldn't I guess, but it feels like a rejection of all the work I've done to help him, like I've forced him into something he isn't. I know it's for his own good - isn't that a phrase we hear far too often - but is needed for any success in adult life.

W has come so far from that tiny technology dependent baby, that toddler who wouldn't eat and ran screaming from a plate of food, and that child we rescued from the h*ll school had become - to the extend that he was saying he'd rather be dead and had planned it all out.

I love him and I love the wonderful, responsible, mature young man he's growing into.
I can see he's a fragile flower and I do fear for how he's going to cope with adult life, work and relationships, but all I can do right now is to keep throwing opportunities his way and keep handing him and teaching him the tools he'll need on his path so that hopefully, once I can't be there to guide him, he can remember a bit of how to do it himself.

So much has happened since last posting!

Well, it's been a long silence I guess, but life sort of snowballed on me!
T has turned 3! And W has turned 10 - heaven help us!
P has seriously injured his foot...treading on a nail.
And I've learnt a new dance - the medical limbo - no, not going over hurdles, or even under them. Just not going anywhere at all! That'll be a post all on it's own :-)
Anyway we've been busy!

Here's a post I sent to a group I belong to as we approached T's birthday -

3 years ago today I was finally hospitalised for the last time in my pg with T. I was 35 weeks and 4 days and while that seems like the Holy Grail to some, when the OB asked me if I wanted to have this baby now my immediate and gut instinct was ‘No, it’s too soon.”

I managed to last an extra few days in hospital and made it to 36 weeks exactly before I started to twitch and pre-e caught up with me completely and the game was over.

We celebrate T’s birthday with a party tomorrow – and it’s the first that he’s actually understood and got excited about – even double and triple checking P’s coming! Yes, we are married and live together but P’s often out and so T

It’s funny really, while W had various dxs by age 3 although not his final and most complete one (Asperger’s), and we thought we had N taped (ADHD dx last year) I feel that T holds a lot more shoes to fall and that we really don’t have any measure of where he’s at or what’s ahead like we did with the other two.

The GP on Friday was saying that T's reflux surgery will be a major step out of the way and well on our way to sorting him out. I pointed out that that is just a small step on the way to sorting out his eating and also his developmental delays. Maybe as protection for myself, maybe it’s just the way I work, I’m focussing beyond the surgery. That I can’t do, but recovery, eating and developmental progress I can work on. That’s where I feel I need to concentrate now.

But it amazes me, with all the pain and trials T has been through that he’s still the sunny person he is! And that’s what we’re celebrating tomorrow – with a helicopter cake (heaven help me!) coloured blue as that’s the only colour he knows!!

T's feeding therapy

Well, today was supposed to be the rush, rush day with T seeing both the speech therapist who is going to work with his eating, and getting the biopsy results from the surgeon.

However....we have a junior doctors' strike today and tomorrow and I got the call from the surgeon's office yesterday to put off T's appointment until next week - I guess it's all hands on deck!

I don't mind really because I was going to have to watch the clock carefully and this way I could make sure we got basic info right. The therapist was really good and thorough. She said that kids who have things like reflux which make feeding unpleasant often learn to self-limit eating and won't increase volumes.

T is apparently eating a good range of textures and his mechanics are fine - it's just the volumes.

We really need to sort out his reflux and then she sees a definate need and real role for her after that. She's going to talk to her seniors about T's feeding post op and the pros and cons of a feeding tube for a kid like Thomas. She said she'd get back to me in a few days and that she'd write a detailed report on T and include a plan for him. She's going to talk to the dietician too and make sure everyone gets a copy of the report. I had my list of contact details for everyone involved with T so she can easily circulate everything. I also gave her a copy of the sheet with our concerns for T. She took photocopies of all of this month's food diary as well.

She did say I was already doing everything she'd recommend I do - including getting him involved in cooking (not that he eats it afterwards!) and that he is still fairly positive about food which shows how well we've done over the past 3 years. She also laughed at the surgeon's idea that once we operate he's just going to start eating - not a chance! Once we've fixed his reflux we've then got a long road of trying to fix his attitude to eating and volumes.
But I feel like we might get somewhere finally with T's eating - which is nice since he's eaten stuff all since Friday!

Eleanor.

We survived the first step in the process!

Yesterday was better in some ways than I’d have hoped and worse in others.

The #%$# anaesthetist called at 6pm the night before – end result I burnt dinner talking him through T! He told me he was going to put T under through an IV – so there went all the work I’d done in playing with a mask all week! Possibly just as well as on Wed T had taken to handing it back to me with a cute “No, ganks.”

The hospital has a tiny car park – and I got a park right by the door so I figured that was a good sign! 30 mins into it all and T decided it was time to go home. It was heart breaking as he trotted out one of his very rare 3 word sentences “Go home please”. He lost the plot when they bandaged up both hands for EMLA, but took his pre med well :-) the nurse was amazed, she thought it’d be the other way around!

He got his long awaited “Ride bed!” to theatre – and flipped! I think he realised that something really big was about to happen and he got scared. He did his red in the face, rigid scream thing even before the anaesthetist got his hands on him. I had warned them he had a temper as he started to lose it and they were impressed :-)

Thankfully, because of my experience with N I had decided to opt out of helping to hold him down and just went to the head and talked to him and stroked him. The anaesthetist kept telling me he’d got into the vein without hurting T and I’m sure it was fear which made T react that way. I’m very grateful for the fact that he said once they started the anaesthetic he’d go to sleep fast but it was quite amazing how fast he went. The nice thing was, as he went the sobs subsided. I know it was the drugs but it felt like he’d calmed down before he went to sleep.

He was only in for 20 mins and the surgeon came and told me they’d taken 2 biopsies and that his oesophagus was mildly inflamed, not terrible but clearly not normal.

Although we’re supposed to be waiting for the biopsy results the surgeon was telling me he’d do the nissen in early June, we’d need to do a barium study etc. So I’d presume from that that he knows what he’s seen in there and he’s clearly certain it’s reflux.

Then someone I hadn’t seen before came running into T's room and asked if I was his mother and took me to Recovery. I was worried until I got a few doors down the corridor and I could hear him screaming. I figured at least he was breathing! Even the surgeon was back in Recovery to try and help! As soon as T saw me he tried to climb out of the bed, showering monitor leads as he came. So they got a comfortable chair and I just sat with him as he calmed down and went back to sleep.

He slept for a bit more and then by the time we went to go home he’d been giving his nurse kittens by bouncing on his bed and making the whole thing rattle and shake! He thought it was hilarious – even though he did actually cut his leg on a toy on the bed in the process!

He’s pretty up and down today but reasonably happy – though his throat sounds sore and almost croupy.

So now we have the battle with the paed and the dietician about how T is to be fed.

We’re seeing the GP today for a weigh and measure and I’m going to ask her to get the paed appointment moved up – and also to get a clear and firm letter from the dietician explaining for the paed why she thinks T’s eating needs more serious addressing.

We’d like to get to see the paed in early to mid May – by then we’ll have the biopsy results and had a chat to the surgeon. We want to know exactly how much weight the paed thinks T is allowed to loose, what she thinks he’s actually going to be able to eat for those 6 weeks post op – we know the only thing out of his staples is formula. And have a firm plan in place to swing in immediately T loses that set amount. It’ll be mid winter and it’s not a time to stuff around with his weight. We also have an appointment with the feeding therapists for the 22^nd so that might help too.

So the procedure went well and he’s clearly not too traumatised by it. I’m now telling him he’ll have to have another “Ride bed” later. I had a fascinating conversation this morning with him “Tummy fix?” “No, T, tummy will be fixed later. You need to have another ride on a bed.” “No, no ride bed!” “You need to have your tummy fixed like N so you need to go to hospital and have another ride on a bed.” “Oh, k.”

Who knows what he understands really, but I’ve got to try, and I can’t tell him it’s all over when I know he has to go back, even if it is a couple of months away.

Eleanor.

Finally some progress!

The on going saga of T seems to be finally coming to a head.
I made a GP appointment for Friday to try and further co-ordinate and push things along for him - as I hadn't heard back about the new zantac, speech therapy, or from the surgeon.

So, typically as I was leaving the house we got the hospital admission forms in the post!

T is due in hospital for a gastroscope and biopsy this Thursday. So of course there's been a real flurry of activity to organize child care for the 6 to 8 hours he'll be at the hospital. I thought the point in going private was so we didn't get things suddenly dumped on us! But at least it's progress!

The GP called the dietitian and after they talked, she came to the conclusion that T needs a feeding tube - whether or not it's reflux. That now makes it a definite.

I don't want to do this - but something has to change. We've fought this food battle for nearly 3 years and T has won. I never thought I'd say that, but that's the way it is.

So the GP is now getting the paed on board - and more importantly up to date! So she can also direct the surgeon to go ahead with planning a peg gastrostomy tube.

The GP also chased up where we were at with the speech therapists who deal with feeding issues - and discovered that they've lost the referral! So she was going to sort it out and re-fax it on Friday, and she said that in light of T's worsening eating she'd class him as urgent! I don't know if I like that idea but if it's what it takes then we'll do it I guess.

So right now I'm trying to get my head around the fact that T is having his first general anaesthetic on Thursday. They like parents to go with the child while they give the anaesthetic - and I did that with N when he had his surgery last year. He fought the anaesthetic as they were giving it - suddenly thought of something he wanted to say and tried to pull the mask off!
It was just horrible - and awful to see the fight suddenly end.
But I'll just have to be strong - this has to be done right as he'll have another shortly and I don't want him scared because of my reaction this time round.

I'll keep people posted!
Eleanor.

You know you've got kids when...

A walk on the lighter side for once...

Last night, as the chilli was bubbling on the stove I was summonsed outside by N. He'd been making good use of the sunshine and made a kite out of a plastic bag and some string. To generate enough wind he'd been riding on his scooter with it trailing out behind. Lovely picture huh?
Yeah - and when P got home I was trying to undo an impossible tangle of kite string from the washing line - don't ask how that happened!

And P's first job when he arrived home? To retrieve a gumboot N had thrown on the roof - double don't ask about that one!! Just put that into the 'seemed like a good idea at the time' category from N!

LOL! Kids are great!

To or not To tube...

"To Tube or not to tube, that is the question..."

Apologies to William Shakespeare of course but Hamlet goes on to wonder if it's better to go on fighting or basically call it a day. That pretty much sums up the situation at the moment with T.

We got our samples of the Vivonex formula on Friday and I got sooo excited to discover that if T could drink 1 litre of the formula a day then he'd be covering his daily levels of protein, vitamins and minerals. Yes, that leaves fats and carbs but I figured a couple of 'doses' of cake a day would see to that issue.

He was drinking around 600-700mls a day already with no major 'fall off' in his food intake. Trust me, I'd be able to tell if his eating went from abysmal to non-existent! So maybe we could do 1000 mls instead, not too huge a jump really???

They recommended that you use milk shake syrup to flavour the formula - as it's so revolting but no one will tell you that! So I achieved the almost impossible and found two different flavours of milkshake powder which were free of dairy and soy - who makes dairy and soy free milkshakes anyway??!

What I didn't count on were 3 different factors -
T basically eats homemade food only. Even the 'natural flavourings' of these powders seemed too strong for him. He drank about 30 mls of each flavour before declaring his 'mouth blurch'. A weakened solution simply meant he could taste the formula!

I did try him with the flavourings in his current formula so I'd know it was the flavouring he was reacting to not the formula itself. Strawberry and banana both had the same result. I managed to find an actual syrup today at a different supermarket and it was chocolate so I bought that too, with the same result.

The other factor I didn't take into account was the fact that the Vivonex formula itself is really nasty! Poor T - one mouthful and he's spitting frantically on the floor (poor Mummy too!!) and then racing off to the bathroom with a cup. That's where the only tap is that he can turn on!
The face he made each time we tried it would have been hilarious except that I was looking at this formula as the Holy Grail to save us from the tube.

The last factor I forgot to consider is that his normal formula consumption is around 400-500mls a day. The hot weather suddenly disappeared over the weekend and his consumption dropped equally suddenly. 400-500 mls to 1 litre is a huge jump and pretty much impossible to0 ask him to do - and we're heading into winter...

I felt quite desperate about the situation over this weekend but as P said "This is T we're talking about, of course it's not simple!"

And so I'm back to the drawing board to see if I can pull a gradual change in formulas, 10 mls in 190, 20 mls in 180 etc. I'm not holding my breath - and all of this has pretty much scraped the bottom of the barrel in terms of remaining tricks to try to avoid needing tube feeds.
At least the taste won't matter if it's tube fed!

And in the meantime - anyone for a milkshake? We can now do strawberry, banana and chocolate!!

Getting to the heart of the matter?

So the day dawned bright and beautiful - and we spent a lot of it inside!

W has been having dizzy spells accompanied by heart palpitations for a while now and so we were referred to the cardiologist. This is a new specialist for us - we've 'done' paediatricians, audiologists, speech therapists, occupational specialists, developmental paediatrician, developmental therapists , psychologists/psychiatrists, orthopaedics, optometrists/ophthalmologist, behavioural intervention workers and dietitians galore - but not cardiology before!

He did an ECG, an echo cardiogram and a stress echo - more ultrasound after treadmill.

End result - essentially healthy heart but something is going on. I hate to think how much all of that is going to cost us - thank heavens for health insurance!

So the next time he has an episode I have to take his pulse and record the rate. We also have to rush him to the hospital if we're close enough and get an ECG done. He needs one done during an episode for the cardio to know what's happening. The other possibility is to take him in to the private hospital and get an event monitor to attach to him so that he can wear that for about 2 weeks and hopefully have another episode while he's wearing it.

But the wonderful news is that he doesn't believe it's anything life threatening. I knew we weren't going to get answers today really as the episodes seem random with nothing in particular triggering them - so we'd have to be really incredibly lucky to catch one while we were there! But it would have been nice to have had some kind of answer rather than now having to wave a vague butterfly net at the problem.

W's happy - he was worried he wouldn't be allowed to play soccer - first practice is this Sunday!

The doctor did seem to think that the cisapride W was on for nearly 2 years for his reflux wouldn't have any effect - but he also said it didn't have any cardio effects at all - when it's know to extend the QT sequence. So I'll have to keep researching because the last thing we need is to be creating a time bomb in T!

And so we're in a holding pattern for W, it's back to the battle front with T - time next week to chase the GP over the formula, antacid and surgery for T. The hospital we were at today is where N had his surgery and where T will have his. I watched as they wheeled someone past us all dressed up for theatre and I could see T's tiny body in my mind's eye, lying on one of those huge beds...so not looking forward to this.

And so we keep trucking onwards,
Eleanor.