It never stops and I want it to!

So, not a quippy title but pretty much sums up where I'm at right now.

W had his scope yesterday to check on his reflux and any damage, biopsies to double check for allergic disease ect.

This was his first anaesthetic and he was very scared beforehand. Thankfully having been through all of this about a year ago with T I was able to tell him pretty much exactly what was going to happen when. Turns out he's like his mother and vomits on anaesthetics - sigh.

The surgeon has said that his oesophagus was quite red in the middle portion - had more to see than with either of the other two! He took biopsies from top, middle and bottom - pink at top and bottom.

Anyway we get the results and schedule yet another nissen fundoplication on the 22nd of Sept. At this point the probable surgery date is 6 Oct.

I was even recognised by a Recovery Room nurse yesterday - this is 4th time I've taken a kid to theatre in less than 2 years. N kicked this all off with his nissen on 2 Oct 2007 and if W gets the 6 Oct date then all 3 will have had this major operation in the space of just over 2 years.

I'm so tired. Tired of kids in pain, tired of kids with health concerns, tired giving meds, monitoring weight, trying to get them to eat, tired of hospitals and doctors - just plain tired.

I just want it to end, I do NOT want to be looking down the barrel of just starting the treadmill all over again.

But we need to, William needs it to happen. 30mg of omeprazole wasn't stopping the reflux, it's causing the cardiac stuff - the reflux has to be stopped and this is the way to do it.

But I want to curl up somewhere or throw a full scale 2 year old tantrum!
IT'S NOT FAIR!

N still isn't eating properly and I've just made an appointment for him for the paed. I don't know what the next step is there - gee maybe we could throw the surgical option at him and put in a tube - yeah whatever. Doubt it but my kids seem to be surgery magnets at the moment so what's another one...I just don't want to ever take a kid to theatre EVER again!
I hate it, hate handing them over, hate collecting them afterwards, hate waiting - just hate it!

Ah well, vent over!
Until next time,
Eleanor.

W catch up!

And so we come to W's grand update!

It's all been rather busy round here so I haven't had a chance to update after I said I would on FaceBook - but now here it is!

I came home from my sister's wedding to W having a few problems with his skin and so have spent time picking out cleansers to just help keep this increasing oil under control and showing him how to clean his face carefully. Phad problems with his skin in his teenage years and although I didn’t really and W takes after me generally with dry skin and sensitivity to soaps, he’s clearly changing and if you can control it before there’s a problem his teens should be much easier on that front.

What a contrast – toilet training T and skin care for W!!!

W couldn’t possibly let N have all the limelight with injuries and so needled T to the point of total frustration who threw the closest thing to hand – some car track with really sharp metal points where they join. These hit W in the top of the foot and punctured the blood vessel there. And so, only the day after N’s accident I was dealing with more blood, again on the carpet and tiles! W, naturally, had to hop in circles to show me how sore it was so we had nice circles of blood on the floor.

While I’m putting pressure on W’s foot and trying to mop up a little of the blood T decides he needs the toilet – and as typical for kids just toilet training, suddenly loses control – and adds urine to the blood on the tiles! Just in case Mummy hasn’t enough to do!!

So the kids were successfully banned from any more bloody incidents for the next few weeks!!!

W’s doing well in most areas at the moment but has decided to continue the family reflux saga. He’s complained of problems for the past year, which I’ve sort of pushed to the background, dealing with T etc. I shouldn’t have done that because now he’s in a bit of a mess.

He’s back on medication, still having problems, occasionally having some blood come up from oesophageal irritation – and just to add to the fun his mystery cardiac thing which we never really got to the bottom of last year – seems to be linked with his reflux episodes. For those who are medically minded it seems to be irritating the vagus nerve as it washes around, causing a SVT episode – so the racing heart is actually a response to the slowing heartbeat first off. It’s now causing a tight chest and shortness of breath, like an asthma attack. So, with a big sigh and a heavy heart, he got referred to the surgeon the younger two have seen and had an initial appointment on the 18^th of August.

We’re not necessarily anticipating surgery, just looking at an endoscopic examination to see what’s going on in there so we have more info to decide where to from here. It may be that medication will control it – but I’m not holding my breath as the younger two had damage despite meds, meds have never fully controlled it for W, and high doses over long periods also carry risks – and a standard type dose isn’t working for him at this stage. Of course, even if meds control damage but don’t stop the cardiac things then they will need further investigation – and if it is purely reflux then that’s a good reason in their own right for further steps to be taken.

After 11 years of reflux and all it’s miseries I am heartily sick of it and wish it’d just go away and leave me and my kids alone!!!

But I am constantly proud and amazed at the wonderful young man W is growing into – although his favourite game at the moment is brother baiting – but he’s learning that new and improved T fights back! I’ve had to put T in time out for punching W lately! W will happily go the extra mile for T on a regular basis – including helping with toilet training and even wiping…how many almost teenaged boys can you say that about?!

Addition to all of this - the surgeon seemed to think with W's history and the length it's all been going on for that he will need a nissen fundoplication just like the other two.

He's booked W in for an oesophagoscopy under general anaesthetic on the 10th of September to take a look and to take biopsies, checking for the very remote possibility that allergic oesophagitis instead of reflux oesophagitis - apparently about 20 % of supposed reflux cases are actually allergic in origin and so he needs to check this instead of going straight to surgery.

It's a quick procedure - T did it a bit before he turned 3 and I blogged about it then - and I'm not too concerned about that part of it.

W brought up fresh bright blood in his reflux this morning, an effortless 'spill' so the bleeding is clearly not from vomiting straining something but from reflux burning and damaging his oesophagus lining.4-5 times in as many weeks - not good! The big concern with this is that over time that burn can cause changes on a cellular level in the oesophagus which can lead to cancer later on. In the case of children with long standing reflux this cancer risk could come home to roost in their 30's.

The guess with T's persistently low iron levels was that he would have been bleeding due to his reflux - it was ulcerated inside after all, but we never saw it. W says when he brings up blood he often feels like something's being stripped off with it and that it really stings. It's rare to have pre-cancerous cell changes in a child's oeophagus but it does happen and if that's the case with W then the biopsies will tell us that too. He has been refluxing for 11 years now so anything is possible.

This morning was the first time P saw the blood and realised how bad this actually is for W - all a bit sobering.

So wish us luck for the 10th of Sept when he goes in for his scope. Only 16 days to go!

N catch up post!

I said I'd try an catch up on where the kids are at right now!
W sees the paed surgeon tomorrow so once I've had some thinking time after that appointment I'll do a W update.

So N's turn today!

We took him to see T's paed a few months back as she deals with a number of kids with ADHD and with N's growth issues, eating problems and the fact that these medications are strong, we thought an over all paediatric view wouldn’t go astray. So she’s scored another patient – and changed everything round on him. He switched from Ritalin to dexamphetamine which seems to control things better for him over the day with fewer peaks and troughs which were hard for everyone. It also doesn’t suppress his appetite anything like the Ritalin did! She also couldn’t believe no one had helped us with his sleep problems – often still awake at midnight and throwing tired little child tantrums around 3pm! So he is now on something to help control the hyperactivity in the evening too – and usually asleep around 9pm so we actually have our evenings back as he now stays in his room when he is awake!

As a result of all these changes he has gained around 500g a month for the past 3 or so months whereas before he’d gain a little, lose it, lose again, gain again, lose but be further ahead just etc – so it’d take him around 3 months to cement any kind of weight gain. He’s also grown a fair bit in height although he’s still small for his age but he is now in 5 year old sized clothes now! Just as well as T is in 3’s and growing…

His eating has improved but still slow and difficult and he’s still on all his supportive high calorie supplements so that’s another issue to bring up again with the paed.

N, of course, is still a total live wire and gives us a run for our money! His most recent highjinks was a quite serious fall – from a pile of cushions, inside, hitting part of the lounge suite…he’d piled them up on the arms of the chair and they’d toppled over and he managed to hit the back of his head, not too far from the end of his skull – any lower and it could have been really serious.

Heads bleed…a lot…and he was on carpet – but we got him onto the tiles quickly. When I stopped the bleeding and checked it out it looked to me like it was going to need medical attention – if for no other reason than he was very shaken and I was concerned about concussion. Of course it was a totally foul, wet, gale force winds, Wellington day and the police were warning that driving was dangerous.

I called the GP who said to take him to the local, small hospital offshoot – basically accidents are an After Hours attended by GPs. So we went…and waited…and waited…and waited – for 3 hours! When the nurse cleaned up the cut I was shocked – it’s over 2 cm long and almost the full thickness of his scalp. When she moved hair out of the cut, the sight was such I felt sick – and people who know me know that doesn’t happen easily!

So the doctor had to staple N’s head shut – 8 staples in all and we had the joy of having them removed a week later. The poor kid was clearly concussed – he barely moved or talked during our 3 hour weight, not even to fidget in his chair and trying to get through to the medical people how out of character this was for N was virtually impossible. He was still very pale, shaken and his concentration span was clearly affected the next day as well – but he was dynamite 2 days after the accident so we figured he was feeling much better!

New Zealand is in the grips of the Swine Flu pandemic, like much of the world. Some genius at the hospital has obviously never heard of infection control as they decided that the best place to seat those with flu-like symptoms was right next to the children’s play area. I cleaned their hands regularly with anti-microbial stuff and we seem to have dodged that bullet again despite there being 3 people come in while we were there, wearing masks but at least one discarded it on the floor!

So that’s been N’s latest event! As T wisely pointed out the next day “Mummy say no climb cushions. N do it. N hurt.” Maybe, just maybe, somewhere in their brains they might realise that Mummy knows a thing or two…nah, don’t delude yourself!

While we dodged the H1N1 virus risk at the hospital the kids have all been pretty sick in the last week and I suspect that we've finally fallen foul of the dreaded bug!

N was an absolute trooper when the doctor took the staples out - and earned a lunch at BK as a reward. He also got given his staples - and the staple remover to add to his collection of medical paraphernalia. He got given the staple gun, minus any extra staples, after they closed his head, and he's still got a lot of stuff after his reflux surgery.

So that's my fireball N updated! I'll be back in the days to come to update the other two.

Long Time no write...

Ah dear,
All my good intentions come to naught - again!
Such a long time since my last update, people will have given up checking here!

I have been busy, if that's any excuse!
I've been off overseas to my sister's wedding in the UK - 13 days of no kids, sleep ins and being able to be a grown up - I even got upgrades to Premium Economy for 3 of the 4 long haul flights...now THAT'S a way to travel!
Granted while I was away various problems happened at home including a surreal experience of talking to P in NZ while I was in Oxford, UK and he was on the floor fiddling with the dishwasher which had broken down!

Then I was home for a week before P headed off to the US for 17 days for work - both his company and my company Little Tom.
So I was solo parenting for a while, as well as picking up the threads and dealing with all the behavioural fall out of so many disruptions to the kids. Now P's been back for a few days things are calming down - but all the kids are sick, possibly with the dreaded H1N1 flu.

I suspect H1N1, despite true flu symptoms, largely because they all have deep hacking coughs, very heavy colds but the bug has totally wiped them out and hit incredibly fast.
W, our toughest nut and healthiest, started getting sick on Wed evening, cheerfully sick on Thurs and in bed all day by Friday! He still looks like death but his energy is returning.

N, who was also going through another major non-eating fad, is about a day behind W - but is still very wiped out. We actually forgot to give him his ADHD meds 2 afternoons in a row and only realised when he started to get on everyone's nerves around 5:30 - 6pm! So that's how lethargic he is!

T only started to come down with it last night and has been coughing so hard he's been retching. I was up 5 times between 12:30 - 6:30am last night. Thankfully because of his tube we know we can keep him hydrated and fed, although with last night's retching I slowed his feed right down to 50mls/hr from his 80ms/hr.

But they don't usually get sick all at once, they like to play bug tag! And they've all got sick fast and heavily so it feels to me like something they haven't had before.

Anyway I'll try an update on all the kids indiviually as I can. W has an appointment with the paed surgeon on Tuesday as his reflux has kicked into hyperdrive again - to the extent he's been bringing up blood on occasion so I'll do a full update on him after that!

Anyway - will be back later as time and sick kids allow!

So much to do...so little time...

I haven't been back here in a while - so what's happened?
T is 4!! Good Lord how did THAT happen??
N's gained weight, lost it and gained it again - and so the yo yo continues
W just keeps on trucking! The soccer season has started with a vengeance - won several games lost one big time and this weekend's one was a beautiful illustration why artificial turf and Wellington wind really don't mix! The wind would get to the ball before they did and blow it in the other direction...still, they won!

This week is appointment roundup - we did the GP for my preferred, controlled weights last week - so Tuesday is the community nurse, Wednesday N gets his new glasses (finally), Thursday is the Dietician for T and Friday is the Speech Therapist for T!

So I'm sure I'll update at some stage in all that.

T isn't doing so well any more. His eating hasn't really improved - I went back over his old food diary entries pre-op and his 'bad' days were worse than his 'bad' days now, but his 'good' days pre-op were better than his 'good' days now.
To add to it all he hasn't gained any weight or grown over the past month, after all his meteoric rises post op!
So I can't see the tube feeds being weaned down any lower, nor would we want to as he's been sickish repeatedly, tired, out of sorts etc and as it's winter I can't see that improving too much.
Just in the last 6 weeks he's had a bout of croup, a cold, an infection round his tube site and then another cold - so it's not been the easiest for him to gain either.

Anyway - I need to change his feed over and get to bed so I'll update later.

New month, new centile...

Yes, you read that right!
T is moving on up...
He got weighed again on Friday and according to the doc's scales and measurements he is now 13.5kg and 95.5cm tall.
That places him on the 5th centile for height and weight and gains of 500g and 0.5cm in the last month - doesn't sound like much and it's not the meteoric rises we had before but over the past nearly 3 months since his op he has gained 1.5kg and grown 1.5cm so that's significant.

Add in the fact that he's been quite sick and we've decreased his overnight feeds a little and it's all a good trend!

He's not really eating any more than he was pre op and I was in a bit of a funk about that in the last week or so but then I sat and thought a bit.

Amazing what can happen when you actually calm down and think...
He had 6 weeks on purees and in fact he had more like 8 as he slowly weaned off them.
He's only in the last 3 weeks or so managed to go most of the time without his solids getting stuck on the way down at least twice a day. When things got stuck it caused him a lot of pain so not really helping to learn that it's safe to eat now.
So he's really only had about 3 weeks where there hasn't been a frequent risk or experience of pain when he eats.

So we're in the food is fun mode and that's the most important lesson for him right now.

The dietician wanted us to decrease feeds from 1 litre overnight down to 800 mls overnight but as I said in my last posting he wound up washed out, exhausted and teary at 800 mls. He's not so bad at 850mls so I'm working on a total of 850mls in 24 hours. Some days he drinks 150 of that in 50 mls bits, some days he only drinks 50 mls. So I just deduct what he's drunk from his overnight total and feed him accordingly.
I'm not completely happy with his energy levels on 850mls - he spends a fair amount of his time "laxing" - his word for relaxing, which consists of cuddling down with a blanket, cuddly and dummy on the couch - but he's got to have the opportunity to try to get hungry and eat.

When the nurse weighed T he said that normally they like to see a gain of 1 kg over a month and T has only gained 450g in a month, but that he'd be happy with T's gains as he's such a busy kid.
I think it shows how there is a gap between the feed levels and his eating levels and required calorie levels but we've got to try and see what he can do on his own too.

But he's a changed child from pre-op and it was all so worth it!

In other news N is not doing so well - he's down a kg in the same month although he has grown - so not looking the best!
However we're hopeful that'll pick up a bit as we've seen T's paed for N and his growth and ADHD medication. She's changed everything around and he's now got something to help slow him down a bit at night as well as a total change of medication for during the day. This doesn't seem to supress his appetite anywhere near as much as the other did - he even ate breakfast 30 mins after taking it whereas on the other you had about 15 mins to try and cram something in!

So improved sleep (he's now out each night well before 10pm when it used to often be midnight) and better compliance - like actually stays IN BED, never mind in his room, and less appetite supression will hopefully result in better growth and weight gains for N!

T just had his birthday party this weekend but I'll post about that later in the week when I do a birthday update on that one just for him.

W just keeps on keeping on :-) He's growing like a weed and eating us out of house and home! I had to buy him new clothes recently as he was looking stupid in his ones - he's really shot up again in the last couple of weeks! He's doing a bit of the snotty pre-teens mixed with Asperger's makes life interesting, but he's doing nicely over all. Gives me hope for the other two that's for sure!

I'll post again later in the week for T's birthday!
Eleanor.

And the wheels keep turning...or is that spinning...

This is soooo frustrating!

We saw the dietician 2 weeks ago and she wanted to reduce T's overnight feeds to get him to eat more. We weren't keen and gave him a few more days on real foods rather than purees to stabilise.
Then we had a night where he point blank refused to eat and just screamed to be put to bed and hooked up to his pump!

We aren't keen on him getting 'lazy' about eating so since then I've reduced his overnight feeds - first by 100mls, then 150 then 200 mls.

He's really not increasing his meal intake though and what he does eat is still tiny - today was a big whoo whoo day - he ate an entire weetbix for breakfast! That gives you some idea of where we're at!
He ate a great dinner last night - but has only had the weetbix all day today.

T has been getting tireder and tireder lately and eating less and less. His weight is down by 300g since we started reducing overnight feeds - and he's not eating any more than he was. We've tried for 2 weeks but he's just declining again.

We even had a couple of nights where his tubing came apart and the bed got fed and not him - and he still wouldn't eat breakfast or morning tea when he should have been famished!

Thursday we had a total meltdown, I'm exhausted tantrum from him in the car while W was at music.
This morning we were back to non eating, lying on the couch or playing quietly. When N nicked some of his toys he went and hid behind a curtain and cried. He spent most of the morning crying at the drop of a hat. It was like some kind of totally awful flashback to the way life was pre-surgery.

I gave him a bottle of formula to drink and after 75 mls he was happy, chatty, stopped crying and semi bouncing again so he's clearly just not getting enough nutrition.

So this weekend we have a lunch with my family on Sunday and a lunch with DH's family on Monday - and church on Sat night or Sun morn. I've had to re-organise everything because he's got so tired - and my family have changed to Sunday lunch instead of Sunday dinner. He can't manage church followed by lunch the way he is right now.

I think we'll have to go back to full overnight feeds, at least for this weekend - all these lunches stuff up his afternoon sleep and if he's low in energy then he can't cope without his sleep.

I hate to go backwards, I'm really not happy about this. But I also can't take an upset, overtired kid to family lunches to spoil it for his siblings and everyone else.
I'm fed up!

Then to add to it we have a mystery...he's had these persistently low iron levels for well over a year now, despite ever increasing the iron dose he's on.

The paed's theory was it was bleeding from the reflux and so should be all good now. In fact she told me that unless he was okay about blood tests not to bother with re-testing. I did it anyway and just got told that his iron levels are half what they should be! He's now taking more than the usual daily dose of iron supplement for his age - and that's age not weight!

What's causing the low iron? Is the low iron causing some of the difficulties in his feeding? Is the cause of the low iron causing problems?

This was supposed to be simple - do the surgery, build him up, teach him eating doesn't hurt (and because he's always been interested in food that wasn't supposed to be taking too long) and then we're home and hosed. Nah, T has to be T I guess.

But I'm just about ready to tear my hair out here!