Does such a thing exist?
I've not lived in one for over 11 years. Can this mythical being be true? Do I dare hope?
We are counting down to W's surgery - 14 days to go.
I'm both looking forward and dreading it in the same moment. I loathe loathe loathe taking the kids in for this kind of thing. It's the total antithesis of parenting, to take your child somewhere and allow them to inflict pain on them - but it's short term and when you see W in the midst of a reflux episode you know it just absolutely has to be done.
I hate the fact that all 3 kids have suffered so badly from the demon reflux that all 3 have needed surgery. Why us? Why them?
I am actually going to ask the surgeon at W's follow up appointment if he has any idea why - he's seen more of the kids than I have, is there something under developed, some muscle which is smaller, weaker whatever than expected.
There must be a reason other than total crap luck, possibly genetics and the effects of prematurity for 100% of our kids to need surgery to stop the reflux.
I have total confidence in our wonderful and caring surgeon - I certainly wouldn't have brought T to him after N's surgery, or W if I had any concerns, this guy's manner is fantastic.
I have confidence in MY ability to guide W'S recovery and know what's normal and what's not - I wouldn't be doing this so close to Christmas and our summer holidays otherwise.
I know W's in a much better position healthwise than T was before his surgery and that it'll be much easier than T with his tube etc.
But I also know W is going to need more TLC and alert watchfulness than N did. W is going to find this very hard emotionally going into it all and he doesn't have the skills to be aware of it let alone express it and ask for help. He doesn't show pain like other people do and it's going to take a fair bit of watchfulness and persuasion on my part to ensure things aren't unrecognised on that front.
So there are other challenges involved in this surgery.
I'm also extremely hopeful that this surgery will be the end of W's cardiac issues and his snoring. If not we're back on the treadmill - an ENT for the snoring and back to the drawing board for the cardiologist. I'm 99% sure myself that that's the root cause but that 1% just keeps niggling - can it be that simple? I know that reflux is the square root of all evil - but this is my family we're talking about - things are never simple!
Our on-going saga with life with 3 prematurely born boys. The fun doesn't end at the NICU door, even for 'late' preemies.
Monday, November 16, 2009
Wednesday, October 28, 2009
8 Quick and Easy Lesson on how to Melt Down an Asperger's Child!
Quick Lessons on how to Melt Down An Aspie -
Lesson One -
Unpredictable reflux episodes - happening any time anywhere with varying degrees of pain ranging from a quick ow to full on taste blood and have dizzy spells because of a nerve irritation causing cardiac changes.
Lesson 2 -
Give them medication which needs to be taken 30 mins before eating each morning and watch them stress when you suggest 1 min before the time is up that they could have some weetbix now - repeat each morning for months on end.
Lesson 3 -
Do various medical investigations - stressful in it's own right and decide that surgery is the best option to deal with the reflux but wait for a couple of weeks for test results.
Lesson 4 -
Get test results and possibly query doing another test which will really set off your sensory issues - and set surgery indefinitely but that it will happen.
Lesson 5 -
Decide the next test is too much and we just want to get on and book the surgery as the surgeon said we could do - but be unable to raise the surgeon...for 3 weeks.
Lesson 6 -
Chase up the surgeon's nurse only to get a call the next day saying surgery's in a week and a half - watch the child completely fall to pieces.
Lesson 7 -
Pull the kid together and tell them it can't happen then because their father is going to be away so there's no childcare for a hospital stay.
Lesson 7 -
Call the nurse, who calls the surgeon and then calls you and we finally get a date set for 1 December.
Fall to pieces a little yourself as you realise that you are about to put another child through major surgery and instead of just thinking and talking about it it's really going to happen.
Child falls to pieces all over again.
Lesson One -
Unpredictable reflux episodes - happening any time anywhere with varying degrees of pain ranging from a quick ow to full on taste blood and have dizzy spells because of a nerve irritation causing cardiac changes.
Lesson 2 -
Give them medication which needs to be taken 30 mins before eating each morning and watch them stress when you suggest 1 min before the time is up that they could have some weetbix now - repeat each morning for months on end.
Lesson 3 -
Do various medical investigations - stressful in it's own right and decide that surgery is the best option to deal with the reflux but wait for a couple of weeks for test results.
Lesson 4 -
Get test results and possibly query doing another test which will really set off your sensory issues - and set surgery indefinitely but that it will happen.
Lesson 5 -
Decide the next test is too much and we just want to get on and book the surgery as the surgeon said we could do - but be unable to raise the surgeon...for 3 weeks.
Lesson 6 -
Chase up the surgeon's nurse only to get a call the next day saying surgery's in a week and a half - watch the child completely fall to pieces.
Lesson 7 -
Pull the kid together and tell them it can't happen then because their father is going to be away so there's no childcare for a hospital stay.
Lesson 7 -
Call the nurse, who calls the surgeon and then calls you and we finally get a date set for 1 December.
Fall to pieces a little yourself as you realise that you are about to put another child through major surgery and instead of just thinking and talking about it it's really going to happen.
Child falls to pieces all over again.
Friday, October 9, 2009
Been a while...
Well, it's been a while and life keeps on moving.
Last month was hectic with 16 medical or related appointments - this month it's a much more manageable projected 10 planned appointments. Of course that's barring disasters but still, touch wood it'll all be fine!
I can't remember where I was up to with kid updates but things keep changing there too.
T's speech was improving and has recently gone down the tubes again too. The SLT did say to expect that so I'm not too concerned - and T has another session on Tues or Wed next week anyway.
On the W front we're still waiting to talk to the surgeon. He's said that W does need surgery at some point for his reflux and our view is, since it's having an effect on his quality of life etc that sooner is better than later. There are reactive cell changes going on in response to the reflux - basically that means he has some but not all the markers of oesophagitis - my guess would be that he has some but not all because he's on medication so it's helping but not stopping the reflux.
The surgeon was suggesting possibly doing a pH probe before going to surgery but was prepared to do the surgery without doing a probe. Now - anyone who has read their way through this blog knows what I think of probes and their reliability and reproducibility (69% reproducibility rate in paeds use) so I'm not going to do another anti probe rant here but needless to say it didn't take us too long to decide against doing a probe!
We should be in contact with the surgeon tis or next week and can hopefully get the surgery booked for December. Otherwise he'll probably have to wait until Feb.
I hate the idea of doing it - at all. But I also know it's the best option for him now and if we have to do it then let's just do it already! It's just over 2 years since N kicked this all off with his fundoplication and in the past two years I have taken a kid to theatre 4 times. I'm really sick of it, the stress and the trauma of it all. It never gets any easier, it doesn't matter how often you do it or how old the kid is. Let's just do it and start 2010 as a good health and no surgery year!
We're working with N on his abysmal eating at the moment too - the paed has pulled the Fortisips for 2 weeks to see if his eating kicks in. Neither of us are holding our breath - it's been 5 days now and while he's eating a bit faster and so less stressful he's not eating any more than he was without them - and currently 500g down. At his current rate, when we go back in 2 weeks he'll be 1.4kg down. He didn't even eat his lunch after spending all morning at the park yesterday.
Other than the kids there have been a lot of other thoughts whirling round in my head lately - mostly prematurity related.
A number of months ago now my father said that we shouldn't count W as a 33 weeker any more because he's 11 now and too old for that.
There has been discussion in the papers here about how early is too early to save, and a couple of cases of 21-23 weekers left without NICU care - and of course if we save these babies then where are the abortion marker dates etc.
So - who is a prem? What does being a prem mean? When are you 'too old to be a prem any more'? As well as the more complex and ethical debate on viability, what's 'too disabled' and who is going to help care for these kids as they grow anyway?
Here in the Catholic Church we have what's known as Respect Life Sunday this Sunday. The monthly paper said on the front page that as part of that they had an article about the difficulties of getting care and support for disabled children.
I got quite excited and eagerly flicked to that section...only to discover it was a mother talking about what it was like 30 odd years ago with her severely autistic son.
Why could they not have got a parent going through it all NOW? Why could they have not got kids on the more marginal aspects - like mine? Everyone knows that basically it's incredibly hard and funding is near non-existent for those severely impacted. What people congratulate themselves on is tht at least we're serving the minorly impacted kids out there in our community. BUT WE'RE NOT!
That's the dirty dark secret, that while resources are scarce for the severely disabled, they are virtually non existent for the less impacted, the multiple 'minor' impacted kids are struggling by with nothing - unless the parents make it their full time job to find out how the system works and scream until their child gets some help, which is often so fragmented that they wind up with input from multiple agencies individually and on seperate waiting lists.
So you tackle one aspect of a problem by finally getting to the top of a list (if you are allowed on it in the first place - if you are disabled enough!) start work on it and either get to the end of the problem or discover there's another facet which actually needs a different therapist so you join a different waiting list.
In the intervening 12-18 months while you wait, the old problem has reverted to the way it was because the first therapist couldn't quite help with it fully because there was this other aspect you needed to deal with. So you re-join your first waiting list and hope madly that they'll both come up together!
So many people think that arriving 4, 6, 8 weeks early really isn't that significant, isn't really prem, is something you grow out of - magically get 'too old to be a prem'.
But life's not like that for many of these late prems, the invisable prems, the 'not really prem'.
The stats are showing that even 36 weekers have a 5 fold increase in ADHD, significantly more 32 to 36 weekers need extra help in school with their reading, writing and maths than their full term peers. You are meant to float around, cushioned from touch, light and sound for 40 weeks and when that gets cut short it has affects on their wiring.
The late premature children even have a rate of feeding problems comparable to that of much more significantly premature babies to to the age of around 2 years old. It is now being acknowledged that when feeding problems start to occur in the late pre-term cohort they actually need as much specilised input as a 28 or so weeker. They don't get it because their prematurity risk is ignored and so the problems compound.
So in answer to one of the questions posed at the start of this - how old is 'too old to be a prem any more' in my book the answer is never. While it is a risk factor which needs to be added in developmentally, educationally and, as he ages, medically then it always has to be in mind.
Some 36 weekers come out fine or the impacts are so minor that you wouldn't know it unless you did a detailed MRI of their brain and found the 'premmy brain'. That's wonderful and fantastic for them and their families - they've got to the "can't pick them out on the playground, what were they wearing this morning?" stage. W, thanks to his Asperger's (due to prematurity) will never get to that indistinguishable point. N, with his ADHD (due to prematurity) won't reliably get to that point. Who knows with T but if, as is suspected there is some kind of language processing problem going on, then he won't either.
They have to live with the marks and affects of their prematurity every day of their lives, it has marked, affected and changed the kids from who they might have been. Some changes may well be positive ones but they are changes none the less. Their prematurity and struggles have also marked and changed me - as a person but particularly as a mother. Again, some of the changes may well be positives, but they are changes.
Prematurity will always be with us - and they will always be premature, among other things.
But first and foremost they will always be my W, N and T - my wonderful, amazing beings of whom I am intensely, crazily proud!
Last month was hectic with 16 medical or related appointments - this month it's a much more manageable projected 10 planned appointments. Of course that's barring disasters but still, touch wood it'll all be fine!
I can't remember where I was up to with kid updates but things keep changing there too.
T's speech was improving and has recently gone down the tubes again too. The SLT did say to expect that so I'm not too concerned - and T has another session on Tues or Wed next week anyway.
On the W front we're still waiting to talk to the surgeon. He's said that W does need surgery at some point for his reflux and our view is, since it's having an effect on his quality of life etc that sooner is better than later. There are reactive cell changes going on in response to the reflux - basically that means he has some but not all the markers of oesophagitis - my guess would be that he has some but not all because he's on medication so it's helping but not stopping the reflux.
The surgeon was suggesting possibly doing a pH probe before going to surgery but was prepared to do the surgery without doing a probe. Now - anyone who has read their way through this blog knows what I think of probes and their reliability and reproducibility (69% reproducibility rate in paeds use) so I'm not going to do another anti probe rant here but needless to say it didn't take us too long to decide against doing a probe!
We should be in contact with the surgeon tis or next week and can hopefully get the surgery booked for December. Otherwise he'll probably have to wait until Feb.
I hate the idea of doing it - at all. But I also know it's the best option for him now and if we have to do it then let's just do it already! It's just over 2 years since N kicked this all off with his fundoplication and in the past two years I have taken a kid to theatre 4 times. I'm really sick of it, the stress and the trauma of it all. It never gets any easier, it doesn't matter how often you do it or how old the kid is. Let's just do it and start 2010 as a good health and no surgery year!
We're working with N on his abysmal eating at the moment too - the paed has pulled the Fortisips for 2 weeks to see if his eating kicks in. Neither of us are holding our breath - it's been 5 days now and while he's eating a bit faster and so less stressful he's not eating any more than he was without them - and currently 500g down. At his current rate, when we go back in 2 weeks he'll be 1.4kg down. He didn't even eat his lunch after spending all morning at the park yesterday.
Other than the kids there have been a lot of other thoughts whirling round in my head lately - mostly prematurity related.
A number of months ago now my father said that we shouldn't count W as a 33 weeker any more because he's 11 now and too old for that.
There has been discussion in the papers here about how early is too early to save, and a couple of cases of 21-23 weekers left without NICU care - and of course if we save these babies then where are the abortion marker dates etc.
So - who is a prem? What does being a prem mean? When are you 'too old to be a prem any more'? As well as the more complex and ethical debate on viability, what's 'too disabled' and who is going to help care for these kids as they grow anyway?
Here in the Catholic Church we have what's known as Respect Life Sunday this Sunday. The monthly paper said on the front page that as part of that they had an article about the difficulties of getting care and support for disabled children.
I got quite excited and eagerly flicked to that section...only to discover it was a mother talking about what it was like 30 odd years ago with her severely autistic son.
Why could they not have got a parent going through it all NOW? Why could they have not got kids on the more marginal aspects - like mine? Everyone knows that basically it's incredibly hard and funding is near non-existent for those severely impacted. What people congratulate themselves on is tht at least we're serving the minorly impacted kids out there in our community. BUT WE'RE NOT!
That's the dirty dark secret, that while resources are scarce for the severely disabled, they are virtually non existent for the less impacted, the multiple 'minor' impacted kids are struggling by with nothing - unless the parents make it their full time job to find out how the system works and scream until their child gets some help, which is often so fragmented that they wind up with input from multiple agencies individually and on seperate waiting lists.
So you tackle one aspect of a problem by finally getting to the top of a list (if you are allowed on it in the first place - if you are disabled enough!) start work on it and either get to the end of the problem or discover there's another facet which actually needs a different therapist so you join a different waiting list.
In the intervening 12-18 months while you wait, the old problem has reverted to the way it was because the first therapist couldn't quite help with it fully because there was this other aspect you needed to deal with. So you re-join your first waiting list and hope madly that they'll both come up together!
So many people think that arriving 4, 6, 8 weeks early really isn't that significant, isn't really prem, is something you grow out of - magically get 'too old to be a prem'.
But life's not like that for many of these late prems, the invisable prems, the 'not really prem'.
The stats are showing that even 36 weekers have a 5 fold increase in ADHD, significantly more 32 to 36 weekers need extra help in school with their reading, writing and maths than their full term peers. You are meant to float around, cushioned from touch, light and sound for 40 weeks and when that gets cut short it has affects on their wiring.
The late premature children even have a rate of feeding problems comparable to that of much more significantly premature babies to to the age of around 2 years old. It is now being acknowledged that when feeding problems start to occur in the late pre-term cohort they actually need as much specilised input as a 28 or so weeker. They don't get it because their prematurity risk is ignored and so the problems compound.
So in answer to one of the questions posed at the start of this - how old is 'too old to be a prem any more' in my book the answer is never. While it is a risk factor which needs to be added in developmentally, educationally and, as he ages, medically then it always has to be in mind.
Some 36 weekers come out fine or the impacts are so minor that you wouldn't know it unless you did a detailed MRI of their brain and found the 'premmy brain'. That's wonderful and fantastic for them and their families - they've got to the "can't pick them out on the playground, what were they wearing this morning?" stage. W, thanks to his Asperger's (due to prematurity) will never get to that indistinguishable point. N, with his ADHD (due to prematurity) won't reliably get to that point. Who knows with T but if, as is suspected there is some kind of language processing problem going on, then he won't either.
They have to live with the marks and affects of their prematurity every day of their lives, it has marked, affected and changed the kids from who they might have been. Some changes may well be positive ones but they are changes none the less. Their prematurity and struggles have also marked and changed me - as a person but particularly as a mother. Again, some of the changes may well be positives, but they are changes.
Prematurity will always be with us - and they will always be premature, among other things.
But first and foremost they will always be my W, N and T - my wonderful, amazing beings of whom I am intensely, crazily proud!
Friday, September 11, 2009
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 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.
Monday, August 24, 2009
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 18th 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!
Monday, August 17, 2009
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!
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!
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,
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!
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.
Sunday, August 16, 2009
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!
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!
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