Sums it up really.
N saw the paed yesterday due to his eating etc.
She's happy enough with the static weight - at least he hasn't lost anything - one of my least favourite phrases around!
I have, however, got a bit of an answer to one of my concerns - that he was on the 20th centile pre nissen and is now hanging, just to the 1st - 3rd for both height and weight. She says he's seen a number of kids do this and they do a rapid growth and catch up around the age of 10 and keep growing until 19 or so instead of the standard 17. Looking at W's recent and continuing metoric surge in height which started about a year ago, he'd fit that pattern.
BUT - you do have to put in the calories to do that growth with.
We discussed the possibility of going back to 4 high cal drinks a day but I really feel that'd be a backwards step. He'll never feel hungry enough to eat if he's filling up on 800mls of high cal formula a day. So we're staying on the 2 drinks a day and adding meds instead.
As he's taking for ever to kick infections, developing mouth ulcers which take for ever to heal, hair thinning and becoming brittle, she's put him on a multi vitamin to help with that. He will also start taking an old school antihistamine called Periactin. This isn't because of allergies but because it has a side effect of increasing appetite so we'll see if we can force him into eating. It may or may not work, there are other appetite inducing meds we can try but this one's been around for a large number of years so has a good safety profile.
It may work for a bit and then wear off - we'll just have to wait and see.
In my research on the med last night I did discover that it is going to be dropped from our drug funding schedule in September so even if it works we'll have to find a substitute by then.
I also took in his script for his high cal drink and it dawned on me last night that if the drug funding body does as it has announced it wants to do, then this will be his last script. They want to reduce the funding which will mean we can't afford it any more and they want to do that from 1 July. Each of N's scripts for it last for 3 month's worth so we're about to collect a March - April lot, then an April - May lot, then a May - June lot.
Then he's got to go onto a powdered version which I'll have to mix up and give him. We've tried that one before and I know he hates the taste of the re-constituted drink.
So one support will be kicked out then and then in 2 months after that the appetite stimulant will be unfunded too.
Going to be interesting times in the next 5 months...
And in the mean time I have a child on 5 separate prescription items - a pill for every season...
Our on-going saga with life with 3 prematurely born boys. The fun doesn't end at the NICU door, even for 'late' preemies.
Tuesday, March 23, 2010
Wednesday, March 17, 2010
Waiting and Worried
Since I last blogged things have been moving on somewhat with N.
We've met the new psych, old one has handed over and moves are afoot to write to the GP and paed about N and his eating and where to from here.
I have asked for a copy of the letter they are sending to the GP and paed - and just, as I'm writing this, have seen the letter. It sheets the concern back to me so same old same old - mum is worried, help mum not feel worried.
So a bit of work here for us to do to actually make sure someone helps the kid.
We have a paed appt for him on Monday so we will see what we will see - never really stops.
N is really the crunch kid at the moment, the other two seem to be holding fairly well on their own - thank heavens for small mercies!
Next week is going to be fun - 2 paed appointments, a psych appointment, an SLT appointment and another therapist appointment...and now I know for sure that N's appointment on Monday is going ahead I need to get him to the GP for a current weight and print out of the data to take to the paed.
And the fun never stops!
We've met the new psych, old one has handed over and moves are afoot to write to the GP and paed about N and his eating and where to from here.
I have asked for a copy of the letter they are sending to the GP and paed - and just, as I'm writing this, have seen the letter. It sheets the concern back to me so same old same old - mum is worried, help mum not feel worried.
So a bit of work here for us to do to actually make sure someone helps the kid.
We have a paed appt for him on Monday so we will see what we will see - never really stops.
N is really the crunch kid at the moment, the other two seem to be holding fairly well on their own - thank heavens for small mercies!
Next week is going to be fun - 2 paed appointments, a psych appointment, an SLT appointment and another therapist appointment...and now I know for sure that N's appointment on Monday is going ahead I need to get him to the GP for a current weight and print out of the data to take to the paed.
And the fun never stops!
Thursday, March 4, 2010
Impending doom - or here we go again...
Why do I feel like I been here before?
I didn't want to be here then and I certainly don't want to be here again.
Same junk different kid...
I could just sit and scream, I could throw a dozy of a two-year old tantrum - heaven only knows I've seen enough of those in my time, I could kick against an imaginary locked door in frustration.
But no, I'll have a wee cry, take a deep breath, plaster on another smile and jump back into the pool again.
Why?
Because I have to. There is no other choice. You can't give up, not on one of your kids and not on something as important as eating.
Yes, same junk, different kid.
I had thought we might have finally cracked a support network who actually knew something and might be able to help N. Thanks to a therapist working with W referring us on because of N's ADHD we got in to see a psych specialising in ADHD.
Initially it was help with behavioural aspects and while that was very welcome we all came very rapidly to the opinion that when N eats his behaviour is much more settled. When he DOESN'T he is scattered, hyperactive, oppositional and extremely difficult to manage. The overwrought and underfed tantrums can be dangerous to him and others around him. His unpredictable behaviour also poses a safety risk to him and those around him.
And so the psych started talking to another psych in the office, one who specialised in eating issues in kids.
Between the specialist eating experience and the specialist ADHD experience I thought we had the Dream Team in place. Maybe, just maybe I could think of my New Year's Resolution/hope of having both the younger two eating enough and properly to sustain themselves without supplements by year's end, actually happening!
But today that light appears to be yet another on-coming train.
Remember how many times this has happened over so many years and in so many different ways with all the kids.
The ADHD psych is leaving - in 3 weeks.
We've only had our second session on eating with her today.
We'd had a number of other sessions with her and she meshed really well with our parenting outlook, N looks forward to her visits, and finally meeting someone who understood how Mr Million Miles an Hour actually works was simply magic - incredible and I've learnt a lot. Things she said, expressed and expected as outcomes or responses were just so perfectly 'N' it was like she was in his head.
She was going to talk to the paed and GP about baselines or growth and when do we look at supplemental options. She was prepared to be the go-between and keep all people on the right page.
And now we've lost it all.
She's referring us on, we're not totally out in the cold. She's going to do a full handover and we'll meet the new person at least once before she leaves. But the new person is a general psych, not an ADHD specialist.
And the new person works in a different office so not with the one who deals with feeding issues.
I would be seriously surprised - but delighted - if this new one was prepared to take on management with the varying people.
Our lovely psych recognises this isn't going to be a quick fix of a couple of sessions, that this is long term, on-going and we need continuing and consistent support. She is going to make sure this one comes to our home so we're not messing round all the time.
But the standard strategies haven't worked with N over many years and I seriously fear that without that combined specialist knowledge we're never going to get anywhere with N.
And the train draws closer - again.
Just to add to the sense of impending doom - the funding is being changed around N's high calorie supplement in July. The replacement product is one I know, through past efforts, that he won't drink.
Where is this train wreck heading?
I didn't want to be here then and I certainly don't want to be here again.
Same junk different kid...
I could just sit and scream, I could throw a dozy of a two-year old tantrum - heaven only knows I've seen enough of those in my time, I could kick against an imaginary locked door in frustration.
But no, I'll have a wee cry, take a deep breath, plaster on another smile and jump back into the pool again.
Why?
Because I have to. There is no other choice. You can't give up, not on one of your kids and not on something as important as eating.
Yes, same junk, different kid.
I had thought we might have finally cracked a support network who actually knew something and might be able to help N. Thanks to a therapist working with W referring us on because of N's ADHD we got in to see a psych specialising in ADHD.
Initially it was help with behavioural aspects and while that was very welcome we all came very rapidly to the opinion that when N eats his behaviour is much more settled. When he DOESN'T he is scattered, hyperactive, oppositional and extremely difficult to manage. The overwrought and underfed tantrums can be dangerous to him and others around him. His unpredictable behaviour also poses a safety risk to him and those around him.
And so the psych started talking to another psych in the office, one who specialised in eating issues in kids.
Between the specialist eating experience and the specialist ADHD experience I thought we had the Dream Team in place. Maybe, just maybe I could think of my New Year's Resolution/hope of having both the younger two eating enough and properly to sustain themselves without supplements by year's end, actually happening!
But today that light appears to be yet another on-coming train.
Remember how many times this has happened over so many years and in so many different ways with all the kids.
The ADHD psych is leaving - in 3 weeks.
We've only had our second session on eating with her today.
We'd had a number of other sessions with her and she meshed really well with our parenting outlook, N looks forward to her visits, and finally meeting someone who understood how Mr Million Miles an Hour actually works was simply magic - incredible and I've learnt a lot. Things she said, expressed and expected as outcomes or responses were just so perfectly 'N' it was like she was in his head.
She was going to talk to the paed and GP about baselines or growth and when do we look at supplemental options. She was prepared to be the go-between and keep all people on the right page.
And now we've lost it all.
She's referring us on, we're not totally out in the cold. She's going to do a full handover and we'll meet the new person at least once before she leaves. But the new person is a general psych, not an ADHD specialist.
And the new person works in a different office so not with the one who deals with feeding issues.
I would be seriously surprised - but delighted - if this new one was prepared to take on management with the varying people.
Our lovely psych recognises this isn't going to be a quick fix of a couple of sessions, that this is long term, on-going and we need continuing and consistent support. She is going to make sure this one comes to our home so we're not messing round all the time.
But the standard strategies haven't worked with N over many years and I seriously fear that without that combined specialist knowledge we're never going to get anywhere with N.
And the train draws closer - again.
Just to add to the sense of impending doom - the funding is being changed around N's high calorie supplement in July. The replacement product is one I know, through past efforts, that he won't drink.
Where is this train wreck heading?
Wednesday, February 24, 2010
If Music is the food of love play on...
I sit here, pondering a blank screen, thoughts tumbling, cogitating on how to start this, how to order it.
The sun is shining brightly, cicadas buzzing and W is playing the piano softly in the background.
Beautiful music, yet every time he plays I remember with a pang that I meant to talk to someone about music therapy and help for him. I was talking to the kids about music and asking about the emotions in a particular piece and W was quite incredulous and told me that music doesn't give emotions because it's just a bunch of notes. Certainly going to hold his playing back if that's how he feels - and terribly sad to think that whole world is still a closed door to him.
Ah well, add it to the list of things to tackle for the kids when I get time...
Food - yes well...T saw the dietician a couple of weeks back and she's happy with progress.
We are now sitting between the 5-10th centiles for everything and he's eating more on a regular basis. Over the past few months he's gained around 500g a month and is now sitting at 15kg.
However - just when I thought we'd be making steady progress towards the end of tube feeds (down to 750ml/24 hrs) she has said that he needs a minimum of 600mls a day to get enough calcium and protein for growth and bone strength etc. I'm not planning on compromising that so if he's gained this month then I'll drop him to 700ml but that'll be the final drop.
Our primary focus, as always, is increasing oral intake but the major issue is solid food. At this point, if T drank 600mls of formula over a day, I know he'd reduce his solid intake. 600mls is a lot of liquid!
He needs that volume because of his food allergies so he can't get the easy forms of calcium particularly.
So the dietician's instructions are to continue to focus on solid food and simply tube the formula overnight.
So until he cracks this one we're back into no-man's land, sleep deprived territory. His feed usually takes around 4 hours and then the pump needs to be turned off. We don't have to re-hang another feed at that point thankfully.
When I get woken early in my efforts to go to sleep then I have huge problems going back to sleep again and will spend literally 1 1/2 - 2 hours awake and trying to go to sleep. So I actually get more sleep and definately more connected sleep if I just stay up to turn the pump off around midnight or so.
The first few weeks were awful but my body's adapting again and like this time last year, I'm actually enjoying the quiet darkness of the house when no one will come and interrupt me with other demands.
That doesn't mean my bed doesn't have a strong magnetic pull most of the time though!
But progress is being made on the T and food front.
Unlike on the N and food front. The war still rages there at fever pitch and honestly, there are as many dark, threatening clouds closing in around us on that one as there were before T's surgery.
The child eats the absolute bare minimum and has recently lost 700g without any effort at all.
He eats reasonably (for him) for several days and then goes back onto starvation rations. Today is a typical day - 1 weetbix for breakfast (which took 30 mins of nagging to get down), followed by one of his high cal drinks to wash down his ADHD med.
Morning tea - usually a battle of around 20 mins to eat a sliver of cake, usually uneaten in the end.
Lunch was a slice of bread with peanut butter and marmite. He's licked some of the topping off but that's all.
Dinner - I know, he'll be the last to finish and most of the 'family time' will be spent telling him to stop talking and eat something. In the end he'll eat about half of what T eats!
We have a meeting tomorrow with a psychologist who has been consulting a fellow practitioner on how to handle the eating. I am, by turns, excited that someone's prepared to try and help us, and fully expecting to find all their suggestions are things we have tried previously and failed with.
P's saying if we don't get anywhere this time round then we have to tube him like T.
First stumbling block - getting a medical person to agree...familiar territory anyone?
Wish us luck!
The sun is shining brightly, cicadas buzzing and W is playing the piano softly in the background.
Beautiful music, yet every time he plays I remember with a pang that I meant to talk to someone about music therapy and help for him. I was talking to the kids about music and asking about the emotions in a particular piece and W was quite incredulous and told me that music doesn't give emotions because it's just a bunch of notes. Certainly going to hold his playing back if that's how he feels - and terribly sad to think that whole world is still a closed door to him.
Ah well, add it to the list of things to tackle for the kids when I get time...
Food - yes well...T saw the dietician a couple of weeks back and she's happy with progress.
We are now sitting between the 5-10th centiles for everything and he's eating more on a regular basis. Over the past few months he's gained around 500g a month and is now sitting at 15kg.
However - just when I thought we'd be making steady progress towards the end of tube feeds (down to 750ml/24 hrs) she has said that he needs a minimum of 600mls a day to get enough calcium and protein for growth and bone strength etc. I'm not planning on compromising that so if he's gained this month then I'll drop him to 700ml but that'll be the final drop.
Our primary focus, as always, is increasing oral intake but the major issue is solid food. At this point, if T drank 600mls of formula over a day, I know he'd reduce his solid intake. 600mls is a lot of liquid!
He needs that volume because of his food allergies so he can't get the easy forms of calcium particularly.
So the dietician's instructions are to continue to focus on solid food and simply tube the formula overnight.
So until he cracks this one we're back into no-man's land, sleep deprived territory. His feed usually takes around 4 hours and then the pump needs to be turned off. We don't have to re-hang another feed at that point thankfully.
When I get woken early in my efforts to go to sleep then I have huge problems going back to sleep again and will spend literally 1 1/2 - 2 hours awake and trying to go to sleep. So I actually get more sleep and definately more connected sleep if I just stay up to turn the pump off around midnight or so.
The first few weeks were awful but my body's adapting again and like this time last year, I'm actually enjoying the quiet darkness of the house when no one will come and interrupt me with other demands.
That doesn't mean my bed doesn't have a strong magnetic pull most of the time though!
But progress is being made on the T and food front.
Unlike on the N and food front. The war still rages there at fever pitch and honestly, there are as many dark, threatening clouds closing in around us on that one as there were before T's surgery.
The child eats the absolute bare minimum and has recently lost 700g without any effort at all.
He eats reasonably (for him) for several days and then goes back onto starvation rations. Today is a typical day - 1 weetbix for breakfast (which took 30 mins of nagging to get down), followed by one of his high cal drinks to wash down his ADHD med.
Morning tea - usually a battle of around 20 mins to eat a sliver of cake, usually uneaten in the end.
Lunch was a slice of bread with peanut butter and marmite. He's licked some of the topping off but that's all.
Dinner - I know, he'll be the last to finish and most of the 'family time' will be spent telling him to stop talking and eat something. In the end he'll eat about half of what T eats!
We have a meeting tomorrow with a psychologist who has been consulting a fellow practitioner on how to handle the eating. I am, by turns, excited that someone's prepared to try and help us, and fully expecting to find all their suggestions are things we have tried previously and failed with.
P's saying if we don't get anywhere this time round then we have to tube him like T.
First stumbling block - getting a medical person to agree...familiar territory anyone?
Wish us luck!
Monday, February 1, 2010
Milestones ticking by...
Here we are, lots of thoughts percolating round in my head, lots of jobs I ought to be doing - all pretty ordinary!
A couple of weeks ago N turned 9. He still has a couple of weeks until his due date 'birthday'.
I commented to the GP when we were there for our monthly weight/height check that it amazes me some times that he's actually survived this long.
This point in the year is full of milestones/anniversaries call them what you will. Events which changed things and quite possibly haunt me with their ripples echoing through the years.
We have N's birthday and due date in Jan/Feb.
We have T's birthday and due date in April/May.
We have W's birthday and due date in June and July.
Thrown in for good measure we have T's first hospitalisation with feeding problems in July and then his second one in August and a bit later where everything went totally pear shaped for us with the docs.
That is definitely a milestone which shaped, changed and haunts me.
In amongst all of this today is exactly 2 months since W's reflux surgery.
Exactly 2 months since we became a totally reflux free household.
W has made so many advances in that time - he is eating completely normally - incl fizzy drink!
He hasn't had a dizzy spell since surgery so that was clearly due to the reflux as he was having a dizzy/cardiac event once ever couple of weeks at the best.
His asthma preventer medication dose has been able to be halved.
The snoring has stopped and he can sleep completely flat.
He has commented with great joy that he can now drink orange juice and fizzy drink without it burning. We were unaware he had been experiencing so much on-going and regular pain with normal activity and that does make me very sad.
On the 3rd of Feb we will mark another milestone.
T will have been reflux free for a full year. The 3rd of Feb 2009 was when he had his fundoplication and g-tube surgery. In many ways it is also another birthday for him.
In this time he has learnt to eat and enjoy eating - although that is still very much a work in progress.
His development has blossomed.
His energy levels and so our freedom as a family have increased dramatically. P and I kept looking at each other over the summer break and marvelling at what events we could get involved with as a family that would have been completely impossible last year.
His growth has gone from under the 1st centile to between the 5th and 10th.
However the 1 year milestone is also cause for reflection.
I had mentally prepared myself for him to have the tube in place for a year. In telling people that I was imagining not using it for around 3 months before removing it a year after it went in.
T is a long way from that magic moment.
He has gained 500g each month for the past two months. Every month he gains I decrease his total volume of formula by 50mls. Maybe not much but he was getting 900mls over a 24 hour period about 4 months ago and he's now getting a total of 750mls over a 24 hour period.
So those weight gains are being sustained by his oral intake and that's the name of the game.
After all he, and we, have been through I am not prepared to compromise his progress - nutritionally or developmentally just because some one else is in a hurry. It will take as long as it takes and in the meantime we will continue as we are - broken nights, tubing to scrub and sterilise, formula to make up and all.
I am still planning on having the tube in place for around 3 months without using it to be sure he's maintaining growth, development and eating - and that he can sustain it all through an illness or two. Pulling the tube and then discovering we weren't quite there yet means either going backwards quite fast - or another surgery to put it back in. I'm not playing either of those games.
So it is a bitter sweet milestone. I am sad we haven't achieved what I had hoped and sad it's another missed milestone. I'm watching T and seeing developmental signs he isn't where he should be either - not just in speech but other areas and wondering where, what impacts and how we're going to work on it all.
I'm still hoping that this time NEXT year we'll be pulling the button. After all it did take us two years to get W eating without supports.
We do talk about life without the pump, T knows about and is desperately keen to have his "I can eat/Bye Bye pump" party. We will get there.
The children's birthdays are always a moment when I reflect on the path prematurity has taken us, what it's given us - and what it's taken away.
I know I have developed strengths and interests I would never have if they had been 'normal', full term and uncomplicated children. But their and our lives have been made much more difficult, and the children will carry the effects all their lives. We don't even really know to what extent T will carry it but can be sure that there are effects - largely in his language difficulties.
I have seen more research today talking about long term health issues in prematurely born children so there are other land mines ticking in our path and I don't know how exactly to step around them.
So many milestones, so many events - in the past and to come. Such a roller coaster ride.
But in a way, to recognise and enjoy the highs, you have to have experienced and understood the lows.
There are so many things I will never take for granted again. So many small rays of sunshine you have to learn how to grasp with both hands and pull towards you to illuminate the way through the next cave.
But the biggest thing I hope I never take for granted is my wonderful, strong, inspiring children.
A couple of weeks ago N turned 9. He still has a couple of weeks until his due date 'birthday'.
I commented to the GP when we were there for our monthly weight/height check that it amazes me some times that he's actually survived this long.
This point in the year is full of milestones/anniversaries call them what you will. Events which changed things and quite possibly haunt me with their ripples echoing through the years.
We have N's birthday and due date in Jan/Feb.
We have T's birthday and due date in April/May.
We have W's birthday and due date in June and July.
Thrown in for good measure we have T's first hospitalisation with feeding problems in July and then his second one in August and a bit later where everything went totally pear shaped for us with the docs.
That is definitely a milestone which shaped, changed and haunts me.
In amongst all of this today is exactly 2 months since W's reflux surgery.
Exactly 2 months since we became a totally reflux free household.
W has made so many advances in that time - he is eating completely normally - incl fizzy drink!
He hasn't had a dizzy spell since surgery so that was clearly due to the reflux as he was having a dizzy/cardiac event once ever couple of weeks at the best.
His asthma preventer medication dose has been able to be halved.
The snoring has stopped and he can sleep completely flat.
He has commented with great joy that he can now drink orange juice and fizzy drink without it burning. We were unaware he had been experiencing so much on-going and regular pain with normal activity and that does make me very sad.
On the 3rd of Feb we will mark another milestone.
T will have been reflux free for a full year. The 3rd of Feb 2009 was when he had his fundoplication and g-tube surgery. In many ways it is also another birthday for him.
In this time he has learnt to eat and enjoy eating - although that is still very much a work in progress.
His development has blossomed.
His energy levels and so our freedom as a family have increased dramatically. P and I kept looking at each other over the summer break and marvelling at what events we could get involved with as a family that would have been completely impossible last year.
His growth has gone from under the 1st centile to between the 5th and 10th.
However the 1 year milestone is also cause for reflection.
I had mentally prepared myself for him to have the tube in place for a year. In telling people that I was imagining not using it for around 3 months before removing it a year after it went in.
T is a long way from that magic moment.
He has gained 500g each month for the past two months. Every month he gains I decrease his total volume of formula by 50mls. Maybe not much but he was getting 900mls over a 24 hour period about 4 months ago and he's now getting a total of 750mls over a 24 hour period.
So those weight gains are being sustained by his oral intake and that's the name of the game.
After all he, and we, have been through I am not prepared to compromise his progress - nutritionally or developmentally just because some one else is in a hurry. It will take as long as it takes and in the meantime we will continue as we are - broken nights, tubing to scrub and sterilise, formula to make up and all.
I am still planning on having the tube in place for around 3 months without using it to be sure he's maintaining growth, development and eating - and that he can sustain it all through an illness or two. Pulling the tube and then discovering we weren't quite there yet means either going backwards quite fast - or another surgery to put it back in. I'm not playing either of those games.
So it is a bitter sweet milestone. I am sad we haven't achieved what I had hoped and sad it's another missed milestone. I'm watching T and seeing developmental signs he isn't where he should be either - not just in speech but other areas and wondering where, what impacts and how we're going to work on it all.
I'm still hoping that this time NEXT year we'll be pulling the button. After all it did take us two years to get W eating without supports.
We do talk about life without the pump, T knows about and is desperately keen to have his "I can eat/Bye Bye pump" party. We will get there.
The children's birthdays are always a moment when I reflect on the path prematurity has taken us, what it's given us - and what it's taken away.
I know I have developed strengths and interests I would never have if they had been 'normal', full term and uncomplicated children. But their and our lives have been made much more difficult, and the children will carry the effects all their lives. We don't even really know to what extent T will carry it but can be sure that there are effects - largely in his language difficulties.
I have seen more research today talking about long term health issues in prematurely born children so there are other land mines ticking in our path and I don't know how exactly to step around them.
So many milestones, so many events - in the past and to come. Such a roller coaster ride.
But in a way, to recognise and enjoy the highs, you have to have experienced and understood the lows.
There are so many things I will never take for granted again. So many small rays of sunshine you have to learn how to grasp with both hands and pull towards you to illuminate the way through the next cave.
But the biggest thing I hope I never take for granted is my wonderful, strong, inspiring children.
Wednesday, January 20, 2010
N is 9
Or nearly anyway!
9 years ago today I was re-admitted to hospital (N had a decent try at arriving at 25 weeks but we thankfully pulled back from that one!) and wound up having him by emergency c-section on the 22nd of Jan.
He did his NICU time as he decided breathing was an optional extra but came home with me, tiny, still very much a prem but bigger than W was, by about 400g.
Reflux hit by 2 weeks old (still not due date) and of course cast it's shadow over the ensuing years.
To a certain extent reflux's pall continues to be cast over him due to his eating problems. I have no idea where his eating is going to take us this year but something has to change with that.
We have a psychologist who specilizes in ADHD and who can enlist some help with it. Failing that, I don't know what else we can do. P keeps talking tube and my heart just sinks.
But over the past 9 years N has lead us a very merry dance - he seems to have a 3 yearly cycle of major or potentially major accidents or events. 6 months old was a vicious tangle with croup which saw us ping ponging between ICU and the ward and with him nearly on a ventilator, 3 years old was a major concussion which took him nearly 3 months to bounce back from, nearly 6 was swallowing a magnetic metal ball - and nearly a magnetic bar with it. If he'd swallowed both then he'd have earnt himself a quick trip to theatre but instead all he earnt was 2 trips to the doctor, a trip to ED and an amazing looking x-ray with the ball as clear as day sitting at the bottom of his stomach! I'm hoping that the 9 or nearly 9 adventure was the 8 staples to his head in the middle of last year!
He has needed physio for gross motor development, on going optometrist involvement - first pair of glasses before age 2, dietician involvement over the years from under 6 months and in 2007 an SLT with feeding 'experience' - she didn't really have any ideas on how to manage him, had various specialist time put in to dx the ADHD and tinker with meds and behaviour and of course the reflux and the surgery.
These days he is still followed by - the optometrist (sort of - yearly checks when his glasses break!), - the GP for scripts for ADHD meds and weight checks each month, - the paediatrician - ADHD management and eating and growth issues, - a psychologist who is helping with ADHD behavioural management and hopefully eating!
The relentless round of appointments waxes and wanes but it never disappears completely.
Yet, despite all of this and the fact that he can be difficult to handle at times I am impressed with the caring, intelligent and thoughtful person he is. He's dynamic, busy, loud and bubbly, everyone knows if he's in the room or house even but he takes so much out of life and throws his all into everything he does - even tantrums!
There are times when I wonder if he'll manage to see another birthday with his reckless and crazy stunts but over all I can't wait to see what he does with his life and who he becomes. One thing's for sure - whatever he does it's going to be with maximum impact, splash and vibrancy!
Happy Birthday Nicholas!
9 years ago today I was re-admitted to hospital (N had a decent try at arriving at 25 weeks but we thankfully pulled back from that one!) and wound up having him by emergency c-section on the 22nd of Jan.
He did his NICU time as he decided breathing was an optional extra but came home with me, tiny, still very much a prem but bigger than W was, by about 400g.
Reflux hit by 2 weeks old (still not due date) and of course cast it's shadow over the ensuing years.
To a certain extent reflux's pall continues to be cast over him due to his eating problems. I have no idea where his eating is going to take us this year but something has to change with that.
We have a psychologist who specilizes in ADHD and who can enlist some help with it. Failing that, I don't know what else we can do. P keeps talking tube and my heart just sinks.
But over the past 9 years N has lead us a very merry dance - he seems to have a 3 yearly cycle of major or potentially major accidents or events. 6 months old was a vicious tangle with croup which saw us ping ponging between ICU and the ward and with him nearly on a ventilator, 3 years old was a major concussion which took him nearly 3 months to bounce back from, nearly 6 was swallowing a magnetic metal ball - and nearly a magnetic bar with it. If he'd swallowed both then he'd have earnt himself a quick trip to theatre but instead all he earnt was 2 trips to the doctor, a trip to ED and an amazing looking x-ray with the ball as clear as day sitting at the bottom of his stomach! I'm hoping that the 9 or nearly 9 adventure was the 8 staples to his head in the middle of last year!
He has needed physio for gross motor development, on going optometrist involvement - first pair of glasses before age 2, dietician involvement over the years from under 6 months and in 2007 an SLT with feeding 'experience' - she didn't really have any ideas on how to manage him, had various specialist time put in to dx the ADHD and tinker with meds and behaviour and of course the reflux and the surgery.
These days he is still followed by - the optometrist (sort of - yearly checks when his glasses break!), - the GP for scripts for ADHD meds and weight checks each month, - the paediatrician - ADHD management and eating and growth issues, - a psychologist who is helping with ADHD behavioural management and hopefully eating!
The relentless round of appointments waxes and wanes but it never disappears completely.
Yet, despite all of this and the fact that he can be difficult to handle at times I am impressed with the caring, intelligent and thoughtful person he is. He's dynamic, busy, loud and bubbly, everyone knows if he's in the room or house even but he takes so much out of life and throws his all into everything he does - even tantrums!
There are times when I wonder if he'll manage to see another birthday with his reckless and crazy stunts but over all I can't wait to see what he does with his life and who he becomes. One thing's for sure - whatever he does it's going to be with maximum impact, splash and vibrancy!
Happy Birthday Nicholas!
Thursday, January 7, 2010
New Year New Direction?
Happy New Year - yes I know I'm late!
Goodbye and good riddance to 2009 - roll on 2010 and may you bring only good things!
As for a new direction, um, probably not. Except we are a reflux-free household now.
I haven't updated here since W's surgery so I'll cut and paste that one shortly. As per usual for our kids it was not as straightforward as it ought to have been.
But W is doing a remarkable recovery. He is now 5 weeks and nearly 3 days post op. On Monday he very carefully ate a roast dinner with no mashing or pureeing.
He also mastered eating chippies again. He's been able to eat rice for nearly a week and yesterday he managed toast with his scrambled eggs.
He has lost weight but I think he's also grown again - he's all arms and legs and angular - like that leggy pre-schooler stage.
The surgery experience Round 3 -
Goodbye and good riddance to 2009 - roll on 2010 and may you bring only good things!
As for a new direction, um, probably not. Except we are a reflux-free household now.
I haven't updated here since W's surgery so I'll cut and paste that one shortly. As per usual for our kids it was not as straightforward as it ought to have been.
But W is doing a remarkable recovery. He is now 5 weeks and nearly 3 days post op. On Monday he very carefully ate a roast dinner with no mashing or pureeing.
He also mastered eating chippies again. He's been able to eat rice for nearly a week and yesterday he managed toast with his scrambled eggs.
He has lost weight but I think he's also grown again - he's all arms and legs and angular - like that leggy pre-schooler stage.
The surgery experience Round 3 -
Hi All,
We're finally home!
He had a pre-med which made him really loopy - "Ohhh Mummy, why have I got 20 fingers???" Really funny and he was so happy and relaxed going into theatre. But sad he has no recollection of it as apparently the theatre he was in has the most advanced technology in the world for laparoscopic surgery - nowhere has better acc to a very proud surgeon showing us all the screens etc.
The surgeon had offered to do a dvd of the surgery for W (as they have the capability in this theatre) and after some thought W decided that'd be cool. Unfortunately the high tech space age theatre had a small glitch and the recorder didn't work. As I said to the surgeon I'd rather than not to work than anything else! But they did use the digital camera and took photos of the theatre and the surgery - interesting in a warped sort of way.
Anyway, surgery took 2 long hours and the surgeon came back and said not only did W really need that but he never wants to operate on one of our kids again as they have all been much worse than the tests indicated. Apparently the oesophagus had shortened due to long term acid exposure, the stomach had adhered to it, the oesophagus had adhered to his diaphragm and so he had to separate all of that before he could do the surgery - he described W's oesophagus as like concrete and it was tricker than he'd anticipated.
W spent 3 hours 15 mins in recovery due to being doped out of his mind, slow to wake with pretty low O2 sats - down in the 68 - 75% range - on 2 litres of O2.
So he spent the whole first night on O2 which was a bit of a worry.
Second night the wretched IV tissued and he point blank refused to let them put a new one in but that cut his morphine as well as fluids - and he didn't want to drink and was in a lot of pain.
The other two had come home on the third day and I was expecting W to do the same - iv out, O2 off, drinking etc. But his pain levels went through the roof and there was no way he was going anywhere. The surgeon came by twice that day and he was even re-visited by the anaesthetist twice. They finally found a opiate based pain med in a liquid form - someone had charted tablets...but he was also prepped for another iv line.
Thankfully he didn't need that and wound up only needing the new med twice - oxycodon.
It was also taking both a nurse and myself to get him out of bed just to go to the loo so there was no way I could take him home.
But by about 3:30 that afternoon I was getting some quick grins and the odd chuckle while he watched cartoons so I knew he was on the way back again. By the evening he was occasionally getting smart with me and managing a supported walk down the corridor.
So we got to go home today - around 11:30. He's in quite a lot of pain still but I think I can manage it better at home than they could because he only had paracetamol charted or the other strong drug they didn't really want to keep giving to him. They did try voltaren by suppository...but he was exceedingly unhappy with that! I'm alternating ibuprophen and paracetamol so he's getting something every three hours and that seems to manage it better than 6 hourly paracetamol!
He's struggling with eating - big triumph today was finishing one of those tiny cans of peach, apricot and semolina!
He's walking around hunched over like an old man but I've told him he needs to straighten up by Sunday - the surgeon also goes to our church and has said he'll see how he is on Sunday...lol!
W's insisting on going to church because he's in the Children's Christmas play and it's the last rehearsal then - and if he doesn't make it then N is his understudy.....
So it's going to be a longish road, but we expected that. It's clear now just how badly he needed the surgery. It's almost certain he'd have had major complications if it had gone on much longer and almost certainly have developed oesophageal cancer in his early middle age - and that doesn't have a good survival rate.
He's in more pain than the other two were I think - sleep deprived haze here - hourly wakings on Tues night to suction his ng tube but he was awake more often in pain or feeling like he was going to throw up, about 4 hourly - but more often due to pain on Wed night and then he slept better last night although he was restless - I think pain - but I didn't!
But the pain levels would make sense because of the extra work the surgeon had to do.
It seems that definitely T and W have been saved from the almost certainty of cancer thanks to the surgery and probably N as well - N was probably in the best state of the three and even he had some oesophageal adhesions and some slight inflammation. W's was so bad he even bled more than expected. T of course had an ulcerated oesophagus.
Poor poor kids.
I just feel so terribly terribly guilty. I should never have let him go untreated as much as I did. Each time before he went back onto meds he'd been complaining for a good few months and I buried my head in the sand. This time round he should have gone onto meds again probably a good year before he did but I was sooo tied up in T and then so adamant that T's surgery was the end of reflux in the house that I just couldn't bear to think about W. The pain he must have been in, even the surgeon's instructions to the nurses were to take any complaints from him seriously because he'll have a very high pain threshold from being in considerable pain for the past few YEARS.
Really, the kid should have had this surgery at about 18 months old.
Anyway, it's DONE and we're home!
There are times and W's surgery was one of them that I wish I didn't know as much as I do, reading some of the monitors etc. I just kept reminding myself of the NICU lesson we were taught - watch the baby not the monitors! It might show no heart beat but if the baby's pink and moving it's probably just a loose lead.
I was concerned about his low O2 levels but his lips were pinkish and fingerbeds looked okay and he could be roused reasonably - I pulled the mean mother trick and told him T was in his room playing with his toys and his levels picked right up and he lifted his whole head off the pillow!
So this year we continue boxing along with N's eating, T's eating, T's speech, N's behaviour etc.
However at least we do seem to have a few things off the alert list - W's snoring has completely stopped since his surgery. He now lies totally flat to sleep on one pillow only - the first time in his life to do so. And his cardiac issues have not happened again since his surgery so we may have solved that one too.
So that gives me head space to pursue the other two's issues in more detail, and to push P into doing something about his foot he hurt a couple of years ago - remember the nail incident anyone? It's still giving him pain and he really needs to go back to the specialist.
So that's our little road map for the time being!
Wishing all a good 2010.
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