And The Fun Continues...

And it gets even more fun!
I went to check on T last night, make sure his tubing was together, see how much milk was left in the container - how much longer til I can go to bed etc. He sat up and started retching!! Full blown, hard retching! It was 11:45pm so not dinner causing the problem.

Stopped the pump, tried venting his tummy - thinking maybe lots of air making him feel sick but no, checked what was left in his tummy - thinking maybe for some reason he wasn't processing it fast enough and was getting over full - very little in there.

So we settled him back down - and reduced the pump flow from 90ml/hr to 80ml/hr.

Thinking about it this morning the other times he's been at 90ml/hr the tubing's come apart at some point in the night. We'd reduced him a little and been increasing by 5ml/hr for the last few nights to see if the pressure was causing the problems. So maybe his tummy can't handle that flow rate?

The trouble is, he needs to get 900-1000 mls over night. It's supposed to be given over 10 hours. You simply can't do it in 10 hours if you go below 90 ml/hr. If it runs too long in the morning then he's fuller and won't eat breakfast. Trying to start it earlier is a mission since we're already starting about 15 mins late usually.

He hates having his tummy cleaned at the moment which has to be done daily so I'm just chucking him the bath every night. But he screams yells and fights! So dinner tends to be late and so it goes on...P's had a lot of rehearsals lately so it's been just me doing the whole bath, dinner, bed routine for all 3 - and N always creates every inch of the way!

The volume at a slower rate means I have to stay up later to change the containers over. The dietician says the formula can only be hung for 8 hours at a stretch, the Nutricia people say 4 hours at a stretch for Neocate/Pepti Junior. Someone has to get up which ever way you cut it with a 10 hour feed and max 8 hour hang time.
What we're doing is a 4 hour hang, ending around midnight and then a 6 hour hang - with freshly made formula to up the ante.
So I'm not getting to bed before midnight, often 12:30 - 1am and then having to be up at 6:30 - 7. But I don't want less sleep!

If I get up in the middle of the night I always have big trouble going back to sleep - P's always done the 2am feeds when the kids were babies. But he's out with lots of late rehearsals at the moment so it's not like he has the option of going to bed early to compensate for the broken night - and he's got some on going health issues right now so he doesn't need to chuck sleep deprivation into the mix to confuse everything. If I got to bed early to make up for it, then N, who often doesn't go to sleep until 10:30 or so, will have run of the house when P's out and he WILL create trouble.

So we're sort of stuffed right now. If I complain about how tired I am then that just pushes them along with the 'see, be tough, he has to eat more, then we can reduce the volume overnight' theme. I'm determined he needs to be given his own time - so I guess I just suck it up right now.
But this is just sooo tiring and frustrating.

We'll give him the weekend and then try 90ml/hr again - hopefully it'll work this time!

Quick Update on T

So, here's where we're at - it's a bumpy old ride...
I spent yesterday feeling pretty down - according to the nurse T has lost 600g in the last week. I got him checked by the GP (we've been doing serial weights there since about April last year) and his last weight there was pre-op and he's lost nearly a kg in that time.

But...over that week in between weights from the nurse he had a really bad time with eating. I contacted the dietician and she was busy and so there was about 4 day delay in getting back to me - that'd account for some of it.

The nurse weighed him with a dirty nappy, jeans, singlet and long sleeved shirt on the first time and the second time with a fresh nappy and t-shirt and shorts. I've now weighed clothes, nappies etc - truely anal I know but I'm NOT going to be blamed for all of this! And those differences account for 300g of the 600g difference!

300g is still 300g and he didn't have it to lose so I'm really not happy. But we've also had a number of times when his tubing has come apart and we've fed the bed instead of the boy so if he's not getting his 'rescue calories' then that's not going to help the situation either.

The hard line approach of the dietician resulted in T just playing with his food, taking a few teaspoonfuls and lots of crying to the point of almost being sick, or doing a kind of choke thing on his food and then spitting out everything in his mouth.
So I'm now going to pretty much totally ditch her management technique. It's not the way I want to operate, nor is it doing T any good.

Yesterday evening and this morning T wanted formula, I wanted him to eat a couple of mouthfuls. He refused so I refused. He opted out entirely at that point.

Lunchtime today he ate well and then asked for formula. So I gave it to him. He said to me "See, eat, finish then milk. No eat, spit out, no milk." That's right buster!!

But he's got this real fear of being sick and on a number of occasions has backed away clearly scared "No, no might be sick". I just give him tastes on the tip of the spoon then, he can see it's only a very small amount, to reassure him. Sometimes then he eats the lot once he's be reassured, other times he doesn't.

I don't know and can't know how his tummy and he are feeling so I have to respect and trust him. If we push and push and he knows there's no escape and he's trapped into doing something that feels bad then we're going to wind up with a kid who is scared of food. We don't have that at the moment - and I don't want to go to that particular circle of hell. Been there before with W, not going back again.

The whole situation drives me crazy - but not so much on T's part but more on the expectation he's just going to be magically better now he's had the surgery. Monday will be 3 weeks post op - he had nearly 4 years of feeding pain and difficulties. It's not going happen overnight but it will happen - on his timetable. So long as his health and development are secure, as measured by his gaining and growing, I'm prepared to take his time on this one. Why others don't want to I don't know.

We see the surgeon on the 10th and the paed the week after and the dietician the week after that so hopefully in that time we can muster information and support for a plan to go forwards WITH T.

I knew it wasn't going to be easy but really, the reflux fallout is just so far-reaching, stretches as far as the eye can see...

Reflux is GONE from our house!

The reflux surgery has finally been done!!
T was excited to be finally going to the hospital on our ‘adventure’ – he was sitting in the car 30 mins before we needed to leave!!

While we were doing all the admission stuff he suddenly realised that this was really going to happen and got scared and started to cry. We wound up doing puzzles on the floor for quite some time to keep him happy…

They were late taking him into theatre which really didn’t help matters and when they came to take him away he totally flipped. He did his ‘go red in the face, rigid and scream’ thing that he does with such skill and style! So I wound up holding him for a while and then they put us both on the bed to go to theatre so I cuddled him close. He calmed a little but then flipped again when they put the mask on his face. The anaesthetist and the nurses were amazed at how strong he was, despite his size.

But he went to sleep quite quickly and it wasn’t as difficult emotionally as it was with N. Maybe that’s because this is T's second anaesthetic, maybe because it’s my 3^rd time to theatre with a kid I don’t know.

Anyway, the anaesthetist and the surgeon both commented on how stable T was during the surgery so it seems they weren’t expecting it. The surgeon’s comment of “Oh boy, did he need that surgery!” shows all was not well in there – no wonder the poor kid wouldn’t eat! Gross reflux and crusting on his oesophagus apparently!

It's wonderfully vindicating that the surgeon said he clearly needed the surgery and that there was absolutely no doubt about the diagnosis. He'd been unsure that the reflux was really bad enough to warrant the surgery but we'd tried everything else and the impacts on T's eating and health were just too great to not do this. But it's also vindicating because one doctor we'd seen very early on in T's life suggested his eating problems were our fault and that there wasn't actually reflux at all. Horribly stressful and made things difficult for a long time to actually push hard enough to get what T needed - so yah boo and sucks to that doctor!

The surgeon did say he thought for a split second about not putting the tube in but decided to go ahead. I'd have been spitting tacks if he hadn't! This is the guy who said in retrospect he should have put one in N!!

But we did have problems getting him off morphine after the surgery. He was actually discharged while he was still receiving iv fluids and 0.2ml/hour of morphine. So I'm keeping on top of the pain meds at home and giving him either pamol or ibuprophen before he starts crying with pain, more when he gets even quieter.
He’s improving on the pain front – today he’s only had 2 lots of paracetamol and 1 of ibuprophen so he’s definitely on the up!

We got home on the Thursday afternoon. T was pretty sad, sore - and frustrated with only purees etc - he's told me I'M NOT HIS FRIEND ANY MORE!! But we're not going to charge onward without dietician approval. We had problems with nausea after eating in hospital and I'm not keen to continue that at home! I stuffed up with N after his surgery and panicked with his weight loss and started to really push him with food. End result he was getting things 'stuck' in his wrap and we're STILL fighting the food war with him 15 months down the track.
T has the tube and so food is for fun now - we'll get him there in tiny baby steps. He has NEVER eaten enough all his life and it's going to take time, lots of it.

But T is managing about 5 teaspoons of puree 3 times a day and drinking his 5 lots of 50 mls during the day rather than having to tube it as the dietician suggested. I figure that the final aim is oral feeding so giving those bolus feeds in a bottle is okay - we're making sure he does complete it in his 15 min time period. We told T that the purees are 'special tummy food' rather than baby food, bit insulting for a nearly 4 year old! I've got a whole array of flavours so HE gets to choose what he wants for each meal. T is normally so accepting of foods he can't eat "T friendly?" is his routine question. But he just wants a bit of brownie and a full bottle. Poor T "hates" me because I can't fill his bottle to the top, he can't have the bread we bake fresh each morning, or his beloved choc brownies which are essentially his life support system! The kids really didn't help the other day - tucking into the brownies in front of him - so I read them the riot act on that one!!

I've hunted out the tiny 120ml bottles I used when the kids were newborns. I used them then to make ME feel better about how little they were able to drink at a time so I figure it might help T too - 50mls looks so pathetic in a 250 ml bottle!

He’s also managing 70mls an hour with the feeding pump overnight feeds now - as I wrote up my feeding notes for the dietician, after lunch yesterday I noticed that he's getting 1 litre of formula a day now. His normal before the op was 500-600. The Friday before the op he drank 900 mls (a hot day!) and I was up for a couple of hours in the night with him crying in reflux pain. Yet now, other than us having to stay up to change over the feed container at the 4 hour point, he's sleeping well.
Clearly a surgical success!

We managed our first overnight pump feed last night without too much of a problem - he was full of air and had to do an emergency venting of his tummy as the feeding pump tube kept popping off his tummy tube! Would have been funny if it wasn't midnight at the time!

The second night wasn’t such a good night - seems we may be missing a bit of tubing - the tube from the pump went into his feeding tube no probs the first time - but not since then!
We really struggled to get it in the second night and I wasn't confident about the connection so went and checked around 10pm. The tubes had parted company - milk flowing in one direction and tummy contents in the other...
Poor kid was asleep so we woke him, changed everything, noticed his tummy was really puffed up so tried to let some air out - and had a tummy volcano - not much in the way of tummy stuff but boy the pressure in there!

Then we just couldn't get the tubes to stay connected at all - so we pushed it in and put tape around it to hold it firm!!
Then in our sleep deprived haze Peter gave T a pamol sized dose of ibuprophen - 3.6mls instead of the 6! Would have been bad if he'd got it the other way round with the other drug - so I'll go back to measuring things in syringes in the evening and putting it in his room ready for use in the night so we're not bumbling round half asleep. But poor T was in a lot of pain quickly because he hadn't had the proper dose.

It is so sad to see him pale, hunched over and so sore and sad. But I keep thinking back to a few days before the surgery when I was up in the middle of the night with a refluxing, sad and sore T. This pain is temporary and a major step on the way to a happy, healthy, painfree T and I have to hang on to that!

But T is such a good, patient, accepting and adapting kid - he makes it easy. We saw the nurse after the second night's fiasco and she's given us long tubing to vent him. But she took off the dressing, cleaned everything out, fiddled with his tube - it all took a long time and he just lay there, whimpered occasionally but stayed still and let her do it.

I think it is the tube pulling that's hunching him over - it's quite long compared to the rest of him and quite heavy to tape up so it's often flopping out below his t-shirt. The surgeon did say the tube was going to be the bane of our life - and so it is! Roll on changing to a button!!
He's said 4 weeks - and I'll make sure it is! He said the dietician can change it for us so I'll confirm that with her or if the nurses can do it for us. We don't see her until nearly 8 weeks post op, but we see the surgeon at 4 weeks so if all else fails I'll get the button from the nurses and take it with us to that appointment and get HIM to change it over!

Despite being a little hunched still T has figured out how to "hurry" slowly when he needs to - like being asked to leave W's room so he grabbed a few of W's toys and scurried away! I figure he's doing okay if he can be naughty!

He goes to the doctor on Tuesday to have the nissen stitches out and then has to go back again on Friday to have the stitch holding the tube plate out - and then we enter the wonderful world of cleaning, turning etc. At the moment all you have to do is lift his shirt and he starts screaming "Don't touch it, don't touch it!"

But we're getting there! I think it's easier with T because we've already got N through the same surgery, just not a tube, so we know how to run that recovery. And T was ng tube fed at home for about 3 weeks when he was 3 months old so some of the equipment, terms etc are the same. I thought the pump would be the hard bit but in fact that's easy, it's all the air in his tummy that's complicating things. Some bits are just reverting to our "normal" - sterilizing bits, constantly washing hands etc - we've had 3 prem babies who were all bottle fed from the start so it's funny how fast you just slip back into it!

We’re learning more about the wind issues anyway – last night W read a story to T while I vented the tube so he’d lie there quietly, so we’re working out systems.

Anyway, that’s where he and we are at! If anyone wants pictures – I did take them, I haven’t transferred them to the computer yet but I will later – so let me know….

Thanks for all your well wishes, thoughts, prayers and everything else. Tuesday will be his first trip out since he got home, and Thursday will be our first attempt to transport him with the pump as we’re having dinner with my parents. If we have to start his overnight feeds late or they get interrupted then that will stuff up breakfast, his morning feeds, then lunch etc. So we really need this to work. Once we’re not blundering around with T and his pump (probably all be much much easier when we get his button) then we can start to think about leaving him and going out somewhere – but we have to be sure enough we know what to expect before we try training grandparents on how to do things! So P and I won’t be out and about socially for a bit, or at least not together. But T has travelled a long road and we’re not mucking it up now!

Just to add to all the fun W got bitten by the neighbour’s pitbull cross a couple of days before T’s surgery so it’s been all go round here! He’s healing up quite well though – lots of dressing changes and medical stuff happening!

Thanks,

Eleanor.

Still here - very busy!

Just a quick post - hopefully more tomorrow!
We started back on schoolwork last week so I have a little less free time, W got bitten by the neighbour's dog, and T had his surgery on Tuesday 3 Feb!
So all go and as usual there's the odd bump in the road...
Will try and post tomorrow.
Eleanor

And it's birthday time again!

So my main mischief maker is turning 8 today!

8 years ago today – 22 Jan – it was a public holiday here in Wellington in New Zealand. I should probably be thankful because I got the registrar on call instead of the OB who was determined, whatever the cost, to prolong the pg – even though I was clearly becoming sicker and sicker.

In the end the on-call specialist decided that with markedly hyperactive, a big BP jump despite the fact it wasn’t high high, the swelling I had and other signs – that in fact I did have pre-e, that my kidneys and liver were starting to fail despite the standard blood tests still being okay – and that I needed another emergency c-section.

N arrived at 8:29pm at 36 + 3 days and weighing 5lb 12 oz and wound up doing 3 ½ days in the NICU and most of that on CPAP.

He did battle with reflux, eating problems, failure to thrive and some developmental delay.

He’s had at least 2 good dices with death – when he was 6 months old and had a really bad bout of croup and chest infection. He was in the ICU and nearly had to be vented. They said when we brought him in he was indrawing so badly that his breastbone was touching his spine. He was so exhausted but would not give in, relax or sleep – he was totally focussed on breathing and staying alive! He had 8 days in hospital and 6 of them on oxygen.

Then when he was 3 he slipped off a rail he’d been swinging on and fell about 4 ft – head first onto concrete. When I rolled him over there was a dent in his forehead but that soon rose into a massive egg! Despite getting the all clear from the GP that afternoon he slipped into a delayed concussion that night and was so unconscious that even the ambulance officers couldn’t wake him. He came round in the ambulance and stunned the docs at the hospital by announcing that his name was N (full name) and his birthday was in January!

He had a lucky escape that time – although suffered double vision, headaches and forgetting well known words (like colours) for about 3 months after the fall.

These days – he is an amazing kid, amazing great and amazing frustrating!

Reflux was finally resolved when he was nearly 7 with a nissen although we still struggle greatly with eating and weight gain.

His ADHD was diagnosed at about 6 ½ and medication has made a big difference to him and all our daily lives although we still struggle with behavioural aspects.

As I said to P a few weeks ago N is one of those people with the strength, energy, drive, determination, intelligence, inquiry – and impulsivity – to change the world we live in. He is going to be a mastermind evil genius or one of those figures who stride across the world stage in some form or other. We unleashed him on the world so it’s our job now to leash him in just enough to keep him on the good side! It’s going to be a bumpy ride – but boy, you can never say life with N is boring!!

Wheeeee woooooo

Yes, that's right! T has loved emergency vehicles since he was tiny (alright then, tinier!)

As the day of his operation is coming closer and we're all suddenly realising what he won't be able to do for a while afterwards - eat his beloved brownies, eat his hehe ray ray (- what he calls cornflakes because of course it's not a kangaroo on the packet but a DOG silly!), jump on the new trampoline, play in his sandpit (sand in healing incisions...don't think so!) or even be too easily transportable - we decided to try and pack in some fun things for him now.

P sings with someone who is also a volunteer fire fighter and had said a number of times that we should organise a time for us to bring the boys down to the station - so we did it this Saturday.

He showed them round all the different compartments and what all the things do. Unsurprisingly N was taken with the tool called a Hoolahan (named after the man who invented it) but they all call it a Hooligan tool - axe/crowbar/metal rod/whatever other wrecking tool you can name! N's eyes lit up at the idea of being ALLOWED to wreck things - a career plan change might be happening for him, especially when he discovered that so long as you are strong enough to carry the gear there is no height or weight restriction for entry into the Fire Brigade here.

They got to get the hoses out and even spray a little. W got really into that...T did the typical thing you see with little kids and garden hoses, right up to the face and then started to fiddle with the triggewr part - that was before he flicked the switches and let them play...

They saw the gear they'd need to use if our hillside went up in flames as well.

Then they got to go inside and try on some of the gear - W had a ball in a helmet and coat carrying round a hose to show that he could take the weight. N nearly dropped an oxygen cylinder!
T looked fantastic in a proper helmet (he'd insisted on wearing his toy one to the station) but declared the boots "too big Mummy!"

Due to N's interest we learnt how the radio works and the different stations called out for different events.

Then we went for a ride! Sadly he wasn't allowed to use lights or sirens because he wasn't on an official job but did let off a whoop as we pulled up outside the station.

He showed us how sprinkler systems work and the benefits and negatives of smoke detectors.

We were there for about 90mins and the boys all had a fantastic time!

I managed to take a number of good photos and have edited and printed them already and put them in T's photo album of current or important events to show people as a talking springboard. He'll thrust them under the nose of anyone prepared to stand still for a minute!

So hopefully when all the post op restrictions come into play he'll have some cool things to look back on - it's only 21 days away now!

Welcome 2009!

And a Happy New Year to you all!

Wishing health, happiness, wealth and gee - let's go all out and wish for world peace while we're at it too :-)

As I went to bed on New Year's Eve I pondered what the new year will bring us.

As I said to P - we know some of the challenges ahead - and we know some of the joys too - one of my sisters is getting married this year and the way it's worked out only I will be going as it's in England but it'll be only my 3rd break on my own since having W. The first was accompanying my mother for moral support while my father had surgery, the second was a Parent to Parent break weekend which was unfortunately the day after I dislocated my shoulder so I didn't really appreciate it as much as I could have done!

T's surgery and learning to eat are a big challenge, like many these days we're facing some big financial challenges.

P's still having random rashes, foot pains etc after the nail incident last year - and we really need to get to the bottom of that one too.

We are working on behaviour modification for N, and scarily I'm going to have to start reading up on Asperger's teens as W is clearly heading that way and already struggling a bit.
Hopefully Tau Toko (an organisation which helped us so very much when the AS was first diagnosed) will be able to help us out soon again - been on that waiting list for nearly a year now.

Anyway, since we have officially ended the holiday period - or what I called the "No number days" when I was little, I want to wish people a good new year with as few big surprises as possible!

Explaination - No number days were the days between Christmas Day (which everyone knows is the 25th!) and my birthday on the 4th of Jan. Those days were always so laid back and relaxed and no one ever seemed to look at the calender that for a while I actually thought those days didn't have dates to them, we just floated seamlessly along in summer relaxation.
Of course it all ended on the 4th because we can't lose track of a birthday now can we??!! :-)