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!