Parenting these boys has always been a bit of a lonely journey.
We learnt that was the way it was going to be as W's quirks became more obvious and various friends drifted away - some ran rather than drifted! Clearly it was too scary to see how easily you could have a different child.
Loneliness, being the 'other', being one of those parents with one of those kids, not fitting are all common refrains from parents with kids who have extra needs.
I knew that, mostly accepted that, over the years.
I know, and would be the first to acknowledge I've been a crap friend to people.
I'm tired much of the time from the long nights for T, usually got a plethora of appointments so on a free day I just want to be at home or not have people coming round. Life is pretty stressful much of the time. Stress, I thought I was handling until I discovered what it was actually doing to my blood pressure. Trying to find the quiet to make phone calls is hard enough, thinking of something else to say harder again
I know that babysitting the kids is a big ask - feeds and allergies for T, meds, challenging behaviour at times and formula for N.
I know my social circle has got smaller and smaller as I couldn't manage to get out to sing any more, then the Parish Council meetings went due to fatigue and babysitting issues because of T's feeds.
I tried to widen it by finding a group of local mums online - but could never make it out to the get-togethers. I tried to take part but the never ending succession of disasters/challenges round here took their toll and I couldn't fake 'normal' enough.
We tried inviting people round for dinners and get togethers since getting out is harder - we've heard lots of "We must do dinner some time", "We'll call and organise lunch sometime!" Even "We must do coffee!"
But nothing ever eventuates and after a while it gets harder and harder to push people - or ourselves.
I was in contact with another mum recently who is finding things a bit hard and lonely. I suggested coffee and all was fine until I suggested suitable days and the conversation went dead.
It's brilliant on FaceBook - loads of friends, communication, interaction. Just nothing IRL.
Due to lack of babysitting P and I have been out together 4 times in the past nearly 4 years since T had his feeding tube placed. Twice have been daytime lunches which have been lovely but nearly 4 years without going to a concert he's singing in, meeting the people he interacts with and talks about, receiving only the reports of what went well or badly is hard.
Harder still is staring down the barrel of at least another year of tube feeding.
Another year assuming all goes well with T.
I've had a wonderful trip to my sister's wedding - by myself, and 1 other time I've been out on my own.
6 events in 4 years - that's it.
I've now got to the point where relatives contact me for other relatives details to invite them to events I'm not being invited to. This has happened more than once.
And so I'm faced with the horrible situation of turning 40 next year.
Traditionally you have a big party with all your friends - P did and we had a wonderful time.
I've actually been looking forward to it, wanting to invite those who have been a help, a support, a friend in that time. Looking forward to being special, being me not a 'nurse' for the kids, a wife, a mother.
Those are all important roles - and ones I cherish. But I wanted something different.
But either I'd have family and a few friends who don't know each other and so the party wouldn't work.
Or I could invite a mountain of people - and have a virtually empty room in the end. I daren't actually do one of those open-ended "We'll be in such and such at this time, come along" for sheer and utter fear of no one showing.
So - no 40th party.
Maybe by 50 things will have come right and I can have the big bash then.
In the meantime I guess I should be glad I'm the "reliable, trustworthy, E will know how to do it, organise it, how to contact them" one.
I know that others have it much worse than we do - and at least there is an end in sight.
I know that our situation is not unique among other special needs parents, although we are unusual in having 3 with extra needs.
I know that I haven't help the situation as much as I might and I apologise to my friends for that. I am also incredibly grateful for the interaction I do get on FaceBook and other online places.
I'm so glad I do have P by my side and we're walking this long and lonely journey together.
We are doing it for the best of reasons - the kids.
But in infamous words - "Eh by gum, it's a hard 'un".
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 26, 2012
Sunday, October 14, 2012
Will we, won't we, will we, won't we, will we go to hospital?
Apologies to C S Lewis for adapting part of "The Lobster Quadrille" but it really is a good summary of where our lives are at the moment with N.
This gut pain issue is continuing, seems to be worsening and definitely seems to be never ending!
Since 13 June he has now been admitted to hospital no less than 4 times for pain management when the gut pain gets to the point I can't manage it with paracetamol and ibuprophen.
We have gone through simply litres of the medication since June. I'm not kidding - 2 500ml bottles of paracetamol disappeared in a little over a month and that was just one month over the past 7 or 8 as it's been worsening.
I'm sick of the smell of it, the sticky residues on the bench, cleaning it out of syringes and little measuring cups because as you get through a bottle the syringe won't reach the medicine any more.
One of his admissions, the July one, he wound up going in by ambulance as he was retching and occasionally vomiting with the pain and had done all day. I didn't like my chances of getting him to hospital without causing him immense pain and so thought the ambulance best. That trip was the first time they gave him intranasal fentynal for pain relief. That's used for heavy duty pain or a sedative. That was because codeine wasn't helping.
This last admission they used it again - and it didn't touch the pain.
We are both so tired. Tired of the never ending dance, guessing and second guessing ourselves.
Do we take him in or not?
Is he bad enough yet?
Are we leaving it too late?
Will he pull back from the brink?
We are also tired of sitting in the ED - mostly they make their 6 hour window - just. But I have spent 8 1/2 hours down there at one point on a crazy busy day.
We are tired of broken nights in hospital.
We are tired of scrambling at home before we take him in, and once we get home - tidying, picking up the threads again, reassuring T, finding out how far behind in his school work W has got and so on.
But most of all we are tired of watching our child in pain.
He is constantly in some level of pain but when things are bad you watch him lying as still as he can until another wave of pain hits. He goes white, doubles over, grits his teeth and often releases an involuntary moan.
I wondered sometimes about the saying 'wracked with pain' before - but now I've seen it personified in my 11 yr old.
A nurse watching him in this state in his most recent admission immediately upgraded his triage status from a 3 to a 2 as she decided he needed a doctor to authorise pain relief NOW.
The hardest thing about it is not watching him (although that's heartbreaking beyond belief) but not being able to do a single thing to help him - or prevent the next bout.
We know it's inevitably going to happen, we can watch him decline down into it, and we have to sit impotently by.
He managed 6 weeks between his June admission and his July one.
He managed almost exactly 4 weeks between July and August admissions.
He got congratulated on doing longer this time when he was in ED - it was 5 weeks, nearly 6, between admissions!
It has got to the point where I don't plan appointments for anything in the run up to that time. Usually it's only 'safe' to plan in the immediate aftermath of a hospitalisation as he comes out a little more stable. But this time he's come out almost as unstable as he went in. He's already having all his possible doses of pain relief a day although the spaces between them are longer. His eating is affected like it is when we're coming close to an admission. But it's only a week since his last trip, the washing and housework has only recently been caught up with, and I'm certainly not ready for another marathon session of trying to distract him with never ending games of Connect 4 and Battleship! I have come to hate Battleship!
And so our lives are constantly in limbo as we watch N circle the drain and we wonder - will we, won't we, will we, won't we, will we take him to hospital - again.
This gut pain issue is continuing, seems to be worsening and definitely seems to be never ending!
Since 13 June he has now been admitted to hospital no less than 4 times for pain management when the gut pain gets to the point I can't manage it with paracetamol and ibuprophen.
We have gone through simply litres of the medication since June. I'm not kidding - 2 500ml bottles of paracetamol disappeared in a little over a month and that was just one month over the past 7 or 8 as it's been worsening.
I'm sick of the smell of it, the sticky residues on the bench, cleaning it out of syringes and little measuring cups because as you get through a bottle the syringe won't reach the medicine any more.
One of his admissions, the July one, he wound up going in by ambulance as he was retching and occasionally vomiting with the pain and had done all day. I didn't like my chances of getting him to hospital without causing him immense pain and so thought the ambulance best. That trip was the first time they gave him intranasal fentynal for pain relief. That's used for heavy duty pain or a sedative. That was because codeine wasn't helping.
This last admission they used it again - and it didn't touch the pain.
We are both so tired. Tired of the never ending dance, guessing and second guessing ourselves.
Do we take him in or not?
Is he bad enough yet?
Are we leaving it too late?
Will he pull back from the brink?
We are also tired of sitting in the ED - mostly they make their 6 hour window - just. But I have spent 8 1/2 hours down there at one point on a crazy busy day.
We are tired of broken nights in hospital.
We are tired of scrambling at home before we take him in, and once we get home - tidying, picking up the threads again, reassuring T, finding out how far behind in his school work W has got and so on.
But most of all we are tired of watching our child in pain.
He is constantly in some level of pain but when things are bad you watch him lying as still as he can until another wave of pain hits. He goes white, doubles over, grits his teeth and often releases an involuntary moan.
I wondered sometimes about the saying 'wracked with pain' before - but now I've seen it personified in my 11 yr old.
A nurse watching him in this state in his most recent admission immediately upgraded his triage status from a 3 to a 2 as she decided he needed a doctor to authorise pain relief NOW.
The hardest thing about it is not watching him (although that's heartbreaking beyond belief) but not being able to do a single thing to help him - or prevent the next bout.
We know it's inevitably going to happen, we can watch him decline down into it, and we have to sit impotently by.
He managed 6 weeks between his June admission and his July one.
He managed almost exactly 4 weeks between July and August admissions.
He got congratulated on doing longer this time when he was in ED - it was 5 weeks, nearly 6, between admissions!
It has got to the point where I don't plan appointments for anything in the run up to that time. Usually it's only 'safe' to plan in the immediate aftermath of a hospitalisation as he comes out a little more stable. But this time he's come out almost as unstable as he went in. He's already having all his possible doses of pain relief a day although the spaces between them are longer. His eating is affected like it is when we're coming close to an admission. But it's only a week since his last trip, the washing and housework has only recently been caught up with, and I'm certainly not ready for another marathon session of trying to distract him with never ending games of Connect 4 and Battleship! I have come to hate Battleship!
And so our lives are constantly in limbo as we watch N circle the drain and we wonder - will we, won't we, will we, won't we, will we take him to hospital - again.
Wednesday, August 8, 2012
It's a topsy turvy life
It's been a while since I posted and it's not because nothing's happening but rather that too much has been happening!
N is developing his "Frequent Flyer" status at the hospital with two admissions in the space of 6 weeks - all for the same problem - this abdominal pain that no one seems able (or particularly interested in) finding the answer to. The last admission everyone blamed the colonoscopy he'd just had (which came up with no answers and everyone seems to think that one test rules out a huge list of possible causes when in fact there is serious doubt they even took biopsies in a relevant area!), the event in November 2011 people chalked up to the magic appearing and disappearing wanna-be appendicitis which apparently children can 'just do' sometimes. But this most recent one had no hook to hang it on like that and sufficiently similar that finally the doctors have noticed and said they might be linked!
He experiences a base level of pain which probably isn't too bad - 'the usual pain Mummy, I can ignore it'. But he also gets hit with waves of acute pain which can make him double over.
The base pain level can also vary - generally following the volume of food he's eaten. So if he's eaten very little his pain is low. When he eats more it gets worse, takes longer to settle and eventually he maxes out the pain relief I can give him at home. You know your life is topsy turvy when you are planning paracetamol doses so that you can slide in a dose before midnight if needed so that if the next day is a bad one you've kept your previous day's doses to a neat 24 hour period.
And so he had a further admission two weeks ago.
His pain had been getting worse and worse. I'd been using paracetamol and ibuprophen overlaid so he was getting something 2 hourly or so and nothing was getting a chance to wear off but he was still in awful pain.
So off we trotted to the GP to see if the dosage regime was suitable, if she could prescribe him anything stronger or she could suggest anything else. The only thing she could suggest was juggling the doses around a little so we could do a 'double up' - paracetamol and ibuprophen dose at the same time in the evening so he could try and sleep as that was being severely compromised due to pain. Apparently he's too light for her to be able to prescribe codeine like he's previously had in ED.
Yet his pain continued to worsen. In the end he spent much of the day sporadically retching with the pain. He'd stop retching as the pain relief took hold and the retching would start again around the 3 hour mark only to stop again as the next 4 hourly dose of paracetamol took hold - despite getting ibuprophen regularly as well. He was exhausted - as were we - and I was out of doses (4 of paracetamol in 24 hours and 3 of ibuphrophen in 24 hours) of pain relief and it was only 7pm. P and I had no idea of what to do to help him.
And so we wound up calling an ambulance.
I didn't want to transport him in that state in the car on my own, P needed to be at home with the other kids, and I figured maybe the ambos could give him some pain relief and we wouldn't need hospital again.
They duly arrived much to T's huge excitement, checked N over, decided they didn't like how fast his heart rate was with the pain as well and so we were off to the hospital - again.
They gave him laughing gas in the ambulance which N decided didn't help much and made him feel dizzy - but was grateful to have something, anything to help this all consuming pain.
In ED they wound up giving codeine again and anti-nausea meds but N's pain was still enough to have him moaning in his bed. In the end the pain was brought under some kind of control with fentanyl (drug they use as a light anaesthetic or conscious sedation drug) and of course he was admitted again.
Apparently his bloods taken in ED showed electrolyte imbalances and so the next day he was started on IV fluids to rebalance that. He also required codeine and anti-nausea meds again on the ward.
I don't believe he should have needed the anti-nausea meds if only the staff had been more responsive to his state and reports of increasing pain. They had started talking about a dose of codeine around 3 pm that afternoon but in the end didn't page the Registrar until 8:30 that night. By then his pain was so bad that he was retching again. The Registrar approved anti-nausea meds but said she wanted to see N before approving pain relief. The expected time of her arrival on the ward kept getting pushed back and she had to be paged twice more before finally appearing. She looked at N, had one quick feel of his tummy and approved the codeine. But by then it was nearly 10pm and he was almost at the point of retching again with the pain.
I guess I'm learning things through this - next time I will be harrassing the staff more about when doctors are actually turning up. I will also be a little more demanding in terms of - if the delay is that long can she please just approve the meds or re-prioritise because my child should not be in that much pain for her to simply be doing paperwork to settle other kids on the other ward.
But I will also being approaching things differently in ED and seeing if they can chart codeine and anti-nausea meds as "As required meds" rather than "Once only meds". The difference there is that nursing staff have more freedom to make judgement calls on requirements.
But I have also learnt with this admission that we are going to have to be pushier with staff over N's care too.
The staff point blank refused to supply his prescription formula this time. This is prescription formula mandated by his paed - and confirmed by his dietitian - who is a hospital dietitian!
The last couple of times I begged and hassled and he got a couple of cans to drink each time - not much when you consider if he's using the canned stuff he should be getting between 5-6 cans a day and the last time that was 2 cans over two days!
I'm also going to need to be stronger on pain relief as he improves - the last day of this most recent admission the nurse was telling us he wasn't due for pain relief yet despite his pain increasing and my knowing for a fact that he actually was due!
The formula issue I'm going to sort out by getting either his paed or dietitian to write a note stating it is prescribed and required. I will photocopy it and keep copies on his file I take with me. They can have a copy to put into his notes on the ward - and I will keep further copies to help insist he gets it.
I need to know he's tolerating his formula before they send him home - this last admission it took around 3 days at home to build his volumes back up again to get his full quantity. The last thing I need is to have to bring him back with dehydration.
So I guess I need to learn more assertiveness to defend my child - because it is a when, not an if, he gets admitted again.
We have only had 14 days since his last admission and still the pain continues.
We have nights when he whimpers in pain in his sleep - when he finally gets to sleep after only dozing sporadically for hours due to the pain. We've had days when he has maxed out his pain relief already.
He has not had a day without needing some pain relief since his last admission - and only 5 days in the past 6 weeks when he hasn't needed any at all. He is tired, often short tempered, frequently teary, struggling more with his school work. He will go outside to play and come in not long later saying his tummy is too sore to run around. He's frequently very very pale and drawn looking.
He also has times when you wouldn't know there was anything wrong!
But no one is any closer to figuring out what on earth is going on for my child, what is wrong with his gut and what is causing the pain - never mind actually trying to do something to fix it.
He has now had 3 admissions in 9 months and 2 in the space of 6 weeks.
And so we also need to be a bit more forth-right with his paed.
This simply cannot continue - for him - or us.
He can't be expected to live like this. It's not living.
Every time N is admitted W and T fall behind in their schoolwork. It affects W's stress levels significantly as well and has a lengthy impact on his ability to cope. We are simply exhausted living on the edge trying to keep N well enough to be home. It is also horrific and heartbreaking to watch him in so much pain so often. We are emotionally exhausted by all of this too. No parent should have to sit by their child, watching them cry and stroke their head, apologising that I simply can't give them anything more for another 2-3 hours.
The topsy turvy nature of our life really came home to me the evening we called the ambulance.
I'd spent a large part of the day preparing samples for P for work and so hadn't done a big clean-up that day. So in the time we had before they arrived I ran round getting things cleaned up.
I had a file of info on N, paed letters etc all ready to grab. I got his meds together immediately. None of the medical stuff was a challenge but the ordinary housework?? That was the panic.
A topsy turvy life indeed.
N is developing his "Frequent Flyer" status at the hospital with two admissions in the space of 6 weeks - all for the same problem - this abdominal pain that no one seems able (or particularly interested in) finding the answer to. The last admission everyone blamed the colonoscopy he'd just had (which came up with no answers and everyone seems to think that one test rules out a huge list of possible causes when in fact there is serious doubt they even took biopsies in a relevant area!), the event in November 2011 people chalked up to the magic appearing and disappearing wanna-be appendicitis which apparently children can 'just do' sometimes. But this most recent one had no hook to hang it on like that and sufficiently similar that finally the doctors have noticed and said they might be linked!
He experiences a base level of pain which probably isn't too bad - 'the usual pain Mummy, I can ignore it'. But he also gets hit with waves of acute pain which can make him double over.
The base pain level can also vary - generally following the volume of food he's eaten. So if he's eaten very little his pain is low. When he eats more it gets worse, takes longer to settle and eventually he maxes out the pain relief I can give him at home. You know your life is topsy turvy when you are planning paracetamol doses so that you can slide in a dose before midnight if needed so that if the next day is a bad one you've kept your previous day's doses to a neat 24 hour period.
And so he had a further admission two weeks ago.
His pain had been getting worse and worse. I'd been using paracetamol and ibuprophen overlaid so he was getting something 2 hourly or so and nothing was getting a chance to wear off but he was still in awful pain.
So off we trotted to the GP to see if the dosage regime was suitable, if she could prescribe him anything stronger or she could suggest anything else. The only thing she could suggest was juggling the doses around a little so we could do a 'double up' - paracetamol and ibuprophen dose at the same time in the evening so he could try and sleep as that was being severely compromised due to pain. Apparently he's too light for her to be able to prescribe codeine like he's previously had in ED.
Yet his pain continued to worsen. In the end he spent much of the day sporadically retching with the pain. He'd stop retching as the pain relief took hold and the retching would start again around the 3 hour mark only to stop again as the next 4 hourly dose of paracetamol took hold - despite getting ibuprophen regularly as well. He was exhausted - as were we - and I was out of doses (4 of paracetamol in 24 hours and 3 of ibuphrophen in 24 hours) of pain relief and it was only 7pm. P and I had no idea of what to do to help him.
And so we wound up calling an ambulance.
I didn't want to transport him in that state in the car on my own, P needed to be at home with the other kids, and I figured maybe the ambos could give him some pain relief and we wouldn't need hospital again.
They duly arrived much to T's huge excitement, checked N over, decided they didn't like how fast his heart rate was with the pain as well and so we were off to the hospital - again.
They gave him laughing gas in the ambulance which N decided didn't help much and made him feel dizzy - but was grateful to have something, anything to help this all consuming pain.
In ED they wound up giving codeine again and anti-nausea meds but N's pain was still enough to have him moaning in his bed. In the end the pain was brought under some kind of control with fentanyl (drug they use as a light anaesthetic or conscious sedation drug) and of course he was admitted again.
Apparently his bloods taken in ED showed electrolyte imbalances and so the next day he was started on IV fluids to rebalance that. He also required codeine and anti-nausea meds again on the ward.
I don't believe he should have needed the anti-nausea meds if only the staff had been more responsive to his state and reports of increasing pain. They had started talking about a dose of codeine around 3 pm that afternoon but in the end didn't page the Registrar until 8:30 that night. By then his pain was so bad that he was retching again. The Registrar approved anti-nausea meds but said she wanted to see N before approving pain relief. The expected time of her arrival on the ward kept getting pushed back and she had to be paged twice more before finally appearing. She looked at N, had one quick feel of his tummy and approved the codeine. But by then it was nearly 10pm and he was almost at the point of retching again with the pain.
I guess I'm learning things through this - next time I will be harrassing the staff more about when doctors are actually turning up. I will also be a little more demanding in terms of - if the delay is that long can she please just approve the meds or re-prioritise because my child should not be in that much pain for her to simply be doing paperwork to settle other kids on the other ward.
But I will also being approaching things differently in ED and seeing if they can chart codeine and anti-nausea meds as "As required meds" rather than "Once only meds". The difference there is that nursing staff have more freedom to make judgement calls on requirements.
But I have also learnt with this admission that we are going to have to be pushier with staff over N's care too.
The staff point blank refused to supply his prescription formula this time. This is prescription formula mandated by his paed - and confirmed by his dietitian - who is a hospital dietitian!
The last couple of times I begged and hassled and he got a couple of cans to drink each time - not much when you consider if he's using the canned stuff he should be getting between 5-6 cans a day and the last time that was 2 cans over two days!
I'm also going to need to be stronger on pain relief as he improves - the last day of this most recent admission the nurse was telling us he wasn't due for pain relief yet despite his pain increasing and my knowing for a fact that he actually was due!
The formula issue I'm going to sort out by getting either his paed or dietitian to write a note stating it is prescribed and required. I will photocopy it and keep copies on his file I take with me. They can have a copy to put into his notes on the ward - and I will keep further copies to help insist he gets it.
I need to know he's tolerating his formula before they send him home - this last admission it took around 3 days at home to build his volumes back up again to get his full quantity. The last thing I need is to have to bring him back with dehydration.
So I guess I need to learn more assertiveness to defend my child - because it is a when, not an if, he gets admitted again.
We have only had 14 days since his last admission and still the pain continues.
We have nights when he whimpers in pain in his sleep - when he finally gets to sleep after only dozing sporadically for hours due to the pain. We've had days when he has maxed out his pain relief already.
He has not had a day without needing some pain relief since his last admission - and only 5 days in the past 6 weeks when he hasn't needed any at all. He is tired, often short tempered, frequently teary, struggling more with his school work. He will go outside to play and come in not long later saying his tummy is too sore to run around. He's frequently very very pale and drawn looking.
He also has times when you wouldn't know there was anything wrong!
But no one is any closer to figuring out what on earth is going on for my child, what is wrong with his gut and what is causing the pain - never mind actually trying to do something to fix it.
He has now had 3 admissions in 9 months and 2 in the space of 6 weeks.
And so we also need to be a bit more forth-right with his paed.
This simply cannot continue - for him - or us.
He can't be expected to live like this. It's not living.
Every time N is admitted W and T fall behind in their schoolwork. It affects W's stress levels significantly as well and has a lengthy impact on his ability to cope. We are simply exhausted living on the edge trying to keep N well enough to be home. It is also horrific and heartbreaking to watch him in so much pain so often. We are emotionally exhausted by all of this too. No parent should have to sit by their child, watching them cry and stroke their head, apologising that I simply can't give them anything more for another 2-3 hours.
The topsy turvy nature of our life really came home to me the evening we called the ambulance.
I'd spent a large part of the day preparing samples for P for work and so hadn't done a big clean-up that day. So in the time we had before they arrived I ran round getting things cleaned up.
I had a file of info on N, paed letters etc all ready to grab. I got his meds together immediately. None of the medical stuff was a challenge but the ordinary housework?? That was the panic.
A topsy turvy life indeed.
Friday, June 29, 2012
SNAFU
A lot of people talk about hitting a bit of a snafu but actually, grammatically, that can't be correct.
SNAFU technically is a military slang term which stands for Situation Normal All F**ked Up.
Not the politest term around and sometimes the way and the people who use it surprise me.
However - it really does describe the last couple of months for us!
We've had around 16 medical appointments in the last 2 months, the vast majority for the younger two kids although my own recent curve ball has added to that as well.
Apart from my own medical testing with the cardiologist the paediatrician also decided that N's situation merited further investigation in the form of a gastroscopy and colonoscopy.
Gastroscope we've done before - for W once pre his Nissen Fundoplication and twice for T - once pre Nissen and once post Nissen while dealing with the mysterious 'gloopies'. So that part didn't concern me much. It's a general anaesthetic but only a short one so not a huge deal.
A colonoscope we've only had the pleasure of dealing with once before and for P. So I knew the prep was going to be a very large challenge with N anyway but my biggest concern was keeping him stable while not being allowed to drink any Ensure or Fortisip. When trying to get him to drink 2 litres of laxatives the last thing we needed was for him to get one of his puky/retchy cycles and lose whatever he'd drunk!
With very careful planning and management - lucozade and iceblocks at strategic intervals - we did get through it. It took a little bribery and corruption to get the laxatives into him but really, I don't blame him. I think you'd need to bribe me too!
He got through the GA fine as I knew he would. He was fine with it during his Nissen after all.
There were glitches with his care at the hospital but I've let them know that in their Evaluation form and was fine when I got him home that evening.
However it was the next day that we hit our SNAFU. Because, you know, life just can't be simple, especially for us.
The morning after he was in pain. It wasn't too bad so I wasn't too concerned. But he got progressively worse all morning and got to the point where even swallowing his Ensure hurt and he didn't want to drink anything. I already had a doctor's appointment for T so I rang and just changed the kid's name!
The doctor was concerned but recommended keeping on keeping on. I obviously didn't pick up some of the concern though because she actually called us at home that night to check on his status and stressed again that any change and get him seen again.
The pain worsened and worsened. He couldn't sleep that night even with pain relief. So we made the call to take him to the ED late that evening. P volunteered to take him in - so I accepted!
Since he's been working from home he's well up with the play with the kids' health status and meds etc so that was easy. What wasn't easy was being the one at home waiting from info and not knowing what's happening at all!
The poor kid was finally admitted to a ward at 5:30am the next day. He ended up with two nights in hospital while we worked to get him stable enough and tolerating drinks properly.
The next big part of the SNAFU was the morning he was finally taken to a ward was W's birthday!
I have long had a rule (which I've posted about before) that we don't do hospital on anyone's birthday. Out patient or clinic appointments I can just about handle but NO ADMISSIONS at all, categorically, totally positively.
We nearly wound up booking surgery for T on his birthday once - just at an appointment not doing the actual surgery. P ran it very very close to the wind by having surgery the day before W's birthday one year. W broke an arm during his own birthday party but that was a few days before his actual birthday. But over the past 14 years no one's actually blown it - until this year!
Poor W was fantastic about it but it really was an awful birthday. Right from when he woke and was hurried round the house and unceremoniously dumped outside his grandparents' house with T so I could race off to the hospital to relieve P, through to a take-away dinner rather than his favourite dinner he'd especially picked. The phone calls to the house that day were all about N not him. He did have a couple of great birthday parties to make up for it but still it was absolutely NOT the way to feel special!
Continuing the SNAFU is the fact that no one can really explain why N's gut reacted so badly to the scopes. Even if you consider the fact that he has a fairly tight Nissen, so does T and he didn't have these issues following his scope. No one even suggested these issues could be a potential complication from a colonoscope, certainly P was back to normal the next day and that's what they tell you to expect.
Even now 2 and a bit weeks after the scopes he's far from his normal state and experiencing pain more often than he was before the scopes.
Throw into this SNAFU the factors that my BP still isn't properly controlled yet and we've had to scramble around to find T a new swim school as his old one got liquidated - yes, I know that swim schools and liquid go together and it does sound funny but the notification of that and resulting uncertainty around lessons, timing and if they were happening all coincided with the day of N's scopes!
Add in the factor that we're still struggling to find out W's enrollment status and what's actually expected of him and us and what's happening or likely to happen next year - but I had a report today that they feel he's settled well at Correspondence School, doing well, he's apparently lovely to teach and talk to on the phone (yeah I know that - I've taught him for years!) and they'd be happy to keep him and you just continue the SNAFU. Yes, we pushed for the right thing and he's happy, settled and excelling - but they could snatch it away at any moment.
And so you see that SNAFU is actually entirely appropriate for where we are right now!
On the bright side of the SNAFU ledger is the fact that T seems happier with the new swim school than he did at the last, N is feeling well enough to annoy everyone again and at least we know his gut really does need looking at in detail because they don't admit for two nights lightly, and W got yet another Excellence grade on his Latin work! He's been collecting Excellence and Well Done grades for most of the time.
And so we continue onwards.
SNAFU technically is a military slang term which stands for Situation Normal All F**ked Up.
Not the politest term around and sometimes the way and the people who use it surprise me.
However - it really does describe the last couple of months for us!
We've had around 16 medical appointments in the last 2 months, the vast majority for the younger two kids although my own recent curve ball has added to that as well.
Apart from my own medical testing with the cardiologist the paediatrician also decided that N's situation merited further investigation in the form of a gastroscopy and colonoscopy.
Gastroscope we've done before - for W once pre his Nissen Fundoplication and twice for T - once pre Nissen and once post Nissen while dealing with the mysterious 'gloopies'. So that part didn't concern me much. It's a general anaesthetic but only a short one so not a huge deal.
A colonoscope we've only had the pleasure of dealing with once before and for P. So I knew the prep was going to be a very large challenge with N anyway but my biggest concern was keeping him stable while not being allowed to drink any Ensure or Fortisip. When trying to get him to drink 2 litres of laxatives the last thing we needed was for him to get one of his puky/retchy cycles and lose whatever he'd drunk!
With very careful planning and management - lucozade and iceblocks at strategic intervals - we did get through it. It took a little bribery and corruption to get the laxatives into him but really, I don't blame him. I think you'd need to bribe me too!
He got through the GA fine as I knew he would. He was fine with it during his Nissen after all.
There were glitches with his care at the hospital but I've let them know that in their Evaluation form and was fine when I got him home that evening.
However it was the next day that we hit our SNAFU. Because, you know, life just can't be simple, especially for us.
The morning after he was in pain. It wasn't too bad so I wasn't too concerned. But he got progressively worse all morning and got to the point where even swallowing his Ensure hurt and he didn't want to drink anything. I already had a doctor's appointment for T so I rang and just changed the kid's name!
The doctor was concerned but recommended keeping on keeping on. I obviously didn't pick up some of the concern though because she actually called us at home that night to check on his status and stressed again that any change and get him seen again.
The pain worsened and worsened. He couldn't sleep that night even with pain relief. So we made the call to take him to the ED late that evening. P volunteered to take him in - so I accepted!
Since he's been working from home he's well up with the play with the kids' health status and meds etc so that was easy. What wasn't easy was being the one at home waiting from info and not knowing what's happening at all!
The poor kid was finally admitted to a ward at 5:30am the next day. He ended up with two nights in hospital while we worked to get him stable enough and tolerating drinks properly.
The next big part of the SNAFU was the morning he was finally taken to a ward was W's birthday!
I have long had a rule (which I've posted about before) that we don't do hospital on anyone's birthday. Out patient or clinic appointments I can just about handle but NO ADMISSIONS at all, categorically, totally positively.
We nearly wound up booking surgery for T on his birthday once - just at an appointment not doing the actual surgery. P ran it very very close to the wind by having surgery the day before W's birthday one year. W broke an arm during his own birthday party but that was a few days before his actual birthday. But over the past 14 years no one's actually blown it - until this year!
Poor W was fantastic about it but it really was an awful birthday. Right from when he woke and was hurried round the house and unceremoniously dumped outside his grandparents' house with T so I could race off to the hospital to relieve P, through to a take-away dinner rather than his favourite dinner he'd especially picked. The phone calls to the house that day were all about N not him. He did have a couple of great birthday parties to make up for it but still it was absolutely NOT the way to feel special!
Continuing the SNAFU is the fact that no one can really explain why N's gut reacted so badly to the scopes. Even if you consider the fact that he has a fairly tight Nissen, so does T and he didn't have these issues following his scope. No one even suggested these issues could be a potential complication from a colonoscope, certainly P was back to normal the next day and that's what they tell you to expect.
Even now 2 and a bit weeks after the scopes he's far from his normal state and experiencing pain more often than he was before the scopes.
Throw into this SNAFU the factors that my BP still isn't properly controlled yet and we've had to scramble around to find T a new swim school as his old one got liquidated - yes, I know that swim schools and liquid go together and it does sound funny but the notification of that and resulting uncertainty around lessons, timing and if they were happening all coincided with the day of N's scopes!
Add in the factor that we're still struggling to find out W's enrollment status and what's actually expected of him and us and what's happening or likely to happen next year - but I had a report today that they feel he's settled well at Correspondence School, doing well, he's apparently lovely to teach and talk to on the phone (yeah I know that - I've taught him for years!) and they'd be happy to keep him and you just continue the SNAFU. Yes, we pushed for the right thing and he's happy, settled and excelling - but they could snatch it away at any moment.
And so you see that SNAFU is actually entirely appropriate for where we are right now!
On the bright side of the SNAFU ledger is the fact that T seems happier with the new swim school than he did at the last, N is feeling well enough to annoy everyone again and at least we know his gut really does need looking at in detail because they don't admit for two nights lightly, and W got yet another Excellence grade on his Latin work! He's been collecting Excellence and Well Done grades for most of the time.
And so we continue onwards.
Wednesday, June 6, 2012
The rhythm of life
The rhythm of life is a powerful beat...
I've a pretty sobering experience in the last few weeks.
People talk about a health crisis changing their outlook, their view on life, bringing into perspective what's really important and so on but you don't understand it really.
A chance blood pressure reading done by the GP about 3-4 weeks ago discovered critically, dangerously high blood pressure - and scored me an instant script for medication, a load of blood tests and a trip to a cardiologist!
I know from experiences during my pregnancies that hypertension carries various risks to other organs and can be dangerous, needs to come down etc. I know how important your heart is - and kidneys etc.
But I didn't realise just how fast things can go wrong.
The GP also detected a heart murmur which hadn't been there previously and so there was some question of how my heart was actually functioning. A very scary proposition.
The first lot of medication not only gave me an irritating cough but left me struggling through a brain fog and absolutely exhausted. When I wasn't resting I simply wasn't functioning - losing count during mixing formula for the younger two, forgetting what I went into a room to do, putting items in stupid places.
P got more and more tired doing T's feeds as I needed every minute of sleep I could get - and he got more and more worried about me. The housework fell further and further out of control.
And the blood pressure didn't come down enough either!
The tests slowly came through - kidneys okay, liver okay, various other bits okay - yay no serious damage done according to the bloods.
Meanwhile I felt sick, had horrible headaches and contemplated what the future held.
All the medical people were stressing how important it was my blood pressure came down and I feared for my future - and that of the kids.
Was I going to be around as they grew up?
How old were they going to be before I wound up leaving them?
It's simply not fair! I want to be a grandmother - watch them succeed as adults, make all this hard, hard work now worth it.
I'd be lying if there weren't tears shed in quiet, solitary moments.
The next medication we tried didn't leave me washed out - but still control over the blood pressure wasn't good enough. I felt fine until I did something normal like wash the kitchen floor - and wound up with a headache. My ability to function, to do MY job was still badly impaired.
And so the last lot of testing happened yesterday and I saw a cardiologist.
It is extremely sobering just how close things came - and I'm not out of the woods by a long long chalk.
High blood pressure can cause changes in your heart. The walls can thicken, making it harder and harder to pump, it empties less efficiently and then you are well on the way to heart failure, valve issues and so on. Heart failure can result in a very shortened life span. Many only have 10-15 years from diagnosis.
Testing yesterday showed that I'm borderline to having thickened walls. If that blood pressure had stayed up much longer I'd be riding that downwards cascade.
I'm only 39.
My eldest is just about to turn 14, youngest only 7. In 10-15 years even my eldest would still be younger than I am now, the youngest barely in his 20's. So much for grandmotherhood and enjoying my adult kids.
And so now I'm on 2 different strong medications to force my blood pressure down as it was still way to high yesterday. While my cholesterol wasn't too bad, okayish for a 'normal' person - as the cardiologist said yesterday I'm not a normal person any more. So I have to take medication to get that down and keep it down too, trying dietary adaptions won't be quick enough or significant enough.
And yes, exercise and losing weight are important too.
While family history has a significant part to play in this mess the major cause of this is considered to be stress - long term, unrelenting stress over caring for the kids and all the challenges they face.
That's not something anyone can fix - and so I have to rely on the medication.
Hopefully my blood pressure will respond to this combination of medications - but it needs to do it quickly or the condition of my heart won't be borderline any more.
It is simply horrifying to think that this has blown up in the past year, that if I hadn't had that chance blood pressure reading I could be looking at a very limited life span now.
Hypertension is called the silent killer for very good reason. We all think about heart attack and stroke but it can do so much more. I still need to see my rheumatologist to see if my arthritis medication needs juggling around the cardiac meds, and probably get my eyes checked to be sure no damage has occurred there because I've had some quirky things happening there too for a little while that I thought I'd deal to some time. Now it needs looking at sooner rather than later.
This has been an incredibly scary time.
It still is really.
You do look at what's important, who and where are your friends when things like this happen.
Due to the constant contact nature of today's world it can be easy to flip a supportive message to someone without thinking about it too much. But what's been interesting, and heartening through this are the numbers from overseas who, yes can't do much, but have bothered to make contact and continue to ask after me, follow up on what happened at various appointments and so on. The few local friends who have done so are even more so significant and important.
I know I've been short tempered with some people through this - fear, splitting headaches and extreme fatigue will do that to you. But it's been interesting to see who has responded with an 'are you okay' message - and those who have simply carried on their merry way, in some cases even being more critical and finding fault with things I say - even when trying to support others but not succeeding too well.
I want to be here for a long time to come. I want to be here for my children - and their children.
I very nearly lost that opportunity recently - and it's still not going to be plain sailing for some time to come.
So life is going to have to have some changes round here - for the very few things I can try.
I knew that high blood pressure was dangerous but I didn't know how fast it can cause major major problems.
So people out there - go get yours checked. Do it for yourself, do it for your kids, your family.
Just do it! You may discover that your life actually hangs on it.
I've a pretty sobering experience in the last few weeks.
People talk about a health crisis changing their outlook, their view on life, bringing into perspective what's really important and so on but you don't understand it really.
A chance blood pressure reading done by the GP about 3-4 weeks ago discovered critically, dangerously high blood pressure - and scored me an instant script for medication, a load of blood tests and a trip to a cardiologist!
I know from experiences during my pregnancies that hypertension carries various risks to other organs and can be dangerous, needs to come down etc. I know how important your heart is - and kidneys etc.
But I didn't realise just how fast things can go wrong.
The GP also detected a heart murmur which hadn't been there previously and so there was some question of how my heart was actually functioning. A very scary proposition.
The first lot of medication not only gave me an irritating cough but left me struggling through a brain fog and absolutely exhausted. When I wasn't resting I simply wasn't functioning - losing count during mixing formula for the younger two, forgetting what I went into a room to do, putting items in stupid places.
P got more and more tired doing T's feeds as I needed every minute of sleep I could get - and he got more and more worried about me. The housework fell further and further out of control.
And the blood pressure didn't come down enough either!
The tests slowly came through - kidneys okay, liver okay, various other bits okay - yay no serious damage done according to the bloods.
Meanwhile I felt sick, had horrible headaches and contemplated what the future held.
All the medical people were stressing how important it was my blood pressure came down and I feared for my future - and that of the kids.
Was I going to be around as they grew up?
How old were they going to be before I wound up leaving them?
It's simply not fair! I want to be a grandmother - watch them succeed as adults, make all this hard, hard work now worth it.
I'd be lying if there weren't tears shed in quiet, solitary moments.
The next medication we tried didn't leave me washed out - but still control over the blood pressure wasn't good enough. I felt fine until I did something normal like wash the kitchen floor - and wound up with a headache. My ability to function, to do MY job was still badly impaired.
And so the last lot of testing happened yesterday and I saw a cardiologist.
It is extremely sobering just how close things came - and I'm not out of the woods by a long long chalk.
High blood pressure can cause changes in your heart. The walls can thicken, making it harder and harder to pump, it empties less efficiently and then you are well on the way to heart failure, valve issues and so on. Heart failure can result in a very shortened life span. Many only have 10-15 years from diagnosis.
Testing yesterday showed that I'm borderline to having thickened walls. If that blood pressure had stayed up much longer I'd be riding that downwards cascade.
I'm only 39.
My eldest is just about to turn 14, youngest only 7. In 10-15 years even my eldest would still be younger than I am now, the youngest barely in his 20's. So much for grandmotherhood and enjoying my adult kids.
And so now I'm on 2 different strong medications to force my blood pressure down as it was still way to high yesterday. While my cholesterol wasn't too bad, okayish for a 'normal' person - as the cardiologist said yesterday I'm not a normal person any more. So I have to take medication to get that down and keep it down too, trying dietary adaptions won't be quick enough or significant enough.
And yes, exercise and losing weight are important too.
While family history has a significant part to play in this mess the major cause of this is considered to be stress - long term, unrelenting stress over caring for the kids and all the challenges they face.
That's not something anyone can fix - and so I have to rely on the medication.
Hopefully my blood pressure will respond to this combination of medications - but it needs to do it quickly or the condition of my heart won't be borderline any more.
It is simply horrifying to think that this has blown up in the past year, that if I hadn't had that chance blood pressure reading I could be looking at a very limited life span now.
Hypertension is called the silent killer for very good reason. We all think about heart attack and stroke but it can do so much more. I still need to see my rheumatologist to see if my arthritis medication needs juggling around the cardiac meds, and probably get my eyes checked to be sure no damage has occurred there because I've had some quirky things happening there too for a little while that I thought I'd deal to some time. Now it needs looking at sooner rather than later.
This has been an incredibly scary time.
It still is really.
You do look at what's important, who and where are your friends when things like this happen.
Due to the constant contact nature of today's world it can be easy to flip a supportive message to someone without thinking about it too much. But what's been interesting, and heartening through this are the numbers from overseas who, yes can't do much, but have bothered to make contact and continue to ask after me, follow up on what happened at various appointments and so on. The few local friends who have done so are even more so significant and important.
I know I've been short tempered with some people through this - fear, splitting headaches and extreme fatigue will do that to you. But it's been interesting to see who has responded with an 'are you okay' message - and those who have simply carried on their merry way, in some cases even being more critical and finding fault with things I say - even when trying to support others but not succeeding too well.
I want to be here for a long time to come. I want to be here for my children - and their children.
I very nearly lost that opportunity recently - and it's still not going to be plain sailing for some time to come.
So life is going to have to have some changes round here - for the very few things I can try.
I knew that high blood pressure was dangerous but I didn't know how fast it can cause major major problems.
So people out there - go get yours checked. Do it for yourself, do it for your kids, your family.
Just do it! You may discover that your life actually hangs on it.
Sunday, May 13, 2012
Are you Mom enough?
That is the question screaming from the latest Time magazine and causing a furore in the international parenting world as it raises - yet again - the breastfeeding bogeyman and essentially who decides who is a 'good' parent.
The breastfeeding fraternity (or should that be sorority?) are upset, the formula feeders see it as yet another bashfest and even the tube-feeders see it as as a 'you think that's extreme? Try what we have to do!' gauntlet to throw down.
But to my tired and sleep-deprived wandering mind it ambles into all sorts of territory.
I'm not even going to try to get into the this parenting school says this, that one says that and if you don't subscribe to my one then you are automatically a bad mother kind of thing.
I just think about all the received wisdom about parenting - everyone has an opinion even the single person on the bus - and everyone seems entitled to give you the benefit of that opinion once you are pregnant or a parent.
Everyone says parenting is not for the faint hearted, people talk about the preemie roller coaster etc and so many parents bemoan their child's tantrums, early morning starts or fussy eating.
There was a discussion recently on a group I'm part of where a mother said she was really over hearing about these everyday woes of parenting but felt awful just feeling that and certainly couldn't say that to any of her friends.
John Key, our Prime Minister in New Zealand, recently said during a school visit that if one of the kids wanted his job they could have it. He commented on his long hours, of often not getting to bed until midnight and up again a bit before 6am and the work load.
Here in New Zealand there has also been talk of needing to sort out safety standards for adventure tourism.
I've said before that the kind of parenting P and I are called on it do is more like extreme parenting, maybe adventure parenting where the roller coaster could lose a wheel any time.
I'm also awake for nearly as many hours as John Key - not running a country, just simply doing what I have to do to keep my child thriving. The rewards are possibly larger than those financial rewards for running a country - but the grind is none the less unremitting.
Parenting is hard yakka - no question.
Those days when one kid after another throws up, those nights when you just get one kid settled and another needs your attention and all you want is to get to bed, those days when you run out of coffee and everything you touch seems to turn to custard - as parents we all have those days.
But special needs parenting is a whole different ball game - and who is mom enough for that?
We don't get to choose to engage in this 'adventure parenting', it gets landed on us and for the most part there simply is no choice involved. We do what we do because we have to, because it's our child, because opting out is not an option.
So often the received wisdom is also not an option either - on the 'are you mom enough' stakes those choices just aren't there.
I have a friend whose blog updates arrive in my email box regularly - recently she posted about one of her children successfully baking a cake by themselves, often it's full of the fun, newsy things they've been doing, outings, school events etc.
I can't grudge her that. I feel bad even thinking about that.
But the day the cake post came through we'd had another tough one with N. Her child is younger than N and all I could think of was "Bugger being able to bake a cake, I just want a kid who will EAT a slice!"
The school hijinx one came in as we were preparing for a specialist appointment for N and trying to explain yet again how his difficulties in eating and frequent sick days actually meant we couldn't even enrol him in school.
Another friend posts of the horrors of having kid after kid come down with a tummy bug - and I can certainly sympathise - but the very next day N has one of his puky retchy events and apart from hating it when the house rings with the sound of his retching - it also means that the dietitian's current plan is an epic fail - again.
And I just wish, just for a moment, that it were something as simple, as benign, as short lived, as a tummy bug - this one's been going for 4 1/2 years and counting!
And so I find kindred spirits with other 'adventure parenting' parents. When my friend with a kid with Type 1 diabetes posts about just wishing she could go to bed but it's going to be a long night monitoring blood sugars I understand some of that worry and exhaustion. When I find myself doing a complete bedding and pj change for T at 1am because the medicine port on his tube has opened and we have a bed of 'tummy junk' to clean up I find other parents who know what it means when you say you 'fed the bed' that night.
When the house is alive with the sound of retching then there's probably someone else out there who knows what that's like - or even wishes her child could retch!
Normally we just keep on trudging forwards, one foot in front of the other. But I'm usually thankful for the fact that while we might be constantly fighting fires it's only one kid at a time.
But right now we're fighting fires with all the kids.
W is struggling with the increase in workload that secondary requires of him - more to the point he's struggling with the changes in routine that entails! Because of other factors I haven't managed his transition at all well and he's been very distressed at times.
We also continue to battle bureaucrats, many of whom appear to be unable to read as they don't apply the documentary evidence we supplied - or even acknowledge it's existence!
N has significantly deteriorated in the past months and every time we think we might be getting somewhere with him or for him - another door slams in our face. We are not only going round and round the medical bush but it's requiring extensive research to actually try and get some handle on what options there are to help. Right now we're holding our breath to see what another doctor says, a doctor it seems who is probably the only person in the country to be able to help him otherwise we'll have to look overseas.
Through all of this I've said thank goodness T is going well, T is fine. Until last week that is when I got a call telling me his iron levels are an issue again. He ought to be getting way more than enough iron in his feeds never mind his food he's eating - so why is it so low?
In the past it's happened alongside reflux - so bleeding in the oesophagus; his complications from his previous surgeries - so probably something to do with the adhesions, tearing in his stomach round his tube etc.
But this time there's no obvious reason. I will find out soon if they've dropped since December's tests and if so by how much and thankfully he has a routine paed appointment coming up this week - but we wanted to use that to push things along for N who sees the same paed!
And so, these days I am simply overwhelmed and worried much of the time. For the first time it's spilling over into my dreams, in the few hours of rest I have I'm arguing with doctors, composing letters or consulting with people in my sleep. I wake up just about as tired as I was when I went to bed.
There needs to be safety standards in 'adventure parenting' I think!
Things like the country running out of N's formula yet again and finding out there's a 6 week delay in supply ought to be against the safety standards.
Sometimes, like John Key, I wish I could give this job to someone else.
So, rather than extended breastfeeding being the bar to jump, I do sometimes wonder - am I mom enough for all this? Is anyone?
The breastfeeding fraternity (or should that be sorority?) are upset, the formula feeders see it as yet another bashfest and even the tube-feeders see it as as a 'you think that's extreme? Try what we have to do!' gauntlet to throw down.
But to my tired and sleep-deprived wandering mind it ambles into all sorts of territory.
I'm not even going to try to get into the this parenting school says this, that one says that and if you don't subscribe to my one then you are automatically a bad mother kind of thing.
I just think about all the received wisdom about parenting - everyone has an opinion even the single person on the bus - and everyone seems entitled to give you the benefit of that opinion once you are pregnant or a parent.
Everyone says parenting is not for the faint hearted, people talk about the preemie roller coaster etc and so many parents bemoan their child's tantrums, early morning starts or fussy eating.
There was a discussion recently on a group I'm part of where a mother said she was really over hearing about these everyday woes of parenting but felt awful just feeling that and certainly couldn't say that to any of her friends.
John Key, our Prime Minister in New Zealand, recently said during a school visit that if one of the kids wanted his job they could have it. He commented on his long hours, of often not getting to bed until midnight and up again a bit before 6am and the work load.
Here in New Zealand there has also been talk of needing to sort out safety standards for adventure tourism.
I've said before that the kind of parenting P and I are called on it do is more like extreme parenting, maybe adventure parenting where the roller coaster could lose a wheel any time.
I'm also awake for nearly as many hours as John Key - not running a country, just simply doing what I have to do to keep my child thriving. The rewards are possibly larger than those financial rewards for running a country - but the grind is none the less unremitting.
Parenting is hard yakka - no question.
Those days when one kid after another throws up, those nights when you just get one kid settled and another needs your attention and all you want is to get to bed, those days when you run out of coffee and everything you touch seems to turn to custard - as parents we all have those days.
But special needs parenting is a whole different ball game - and who is mom enough for that?
We don't get to choose to engage in this 'adventure parenting', it gets landed on us and for the most part there simply is no choice involved. We do what we do because we have to, because it's our child, because opting out is not an option.
So often the received wisdom is also not an option either - on the 'are you mom enough' stakes those choices just aren't there.
I have a friend whose blog updates arrive in my email box regularly - recently she posted about one of her children successfully baking a cake by themselves, often it's full of the fun, newsy things they've been doing, outings, school events etc.
I can't grudge her that. I feel bad even thinking about that.
But the day the cake post came through we'd had another tough one with N. Her child is younger than N and all I could think of was "Bugger being able to bake a cake, I just want a kid who will EAT a slice!"
The school hijinx one came in as we were preparing for a specialist appointment for N and trying to explain yet again how his difficulties in eating and frequent sick days actually meant we couldn't even enrol him in school.
Another friend posts of the horrors of having kid after kid come down with a tummy bug - and I can certainly sympathise - but the very next day N has one of his puky retchy events and apart from hating it when the house rings with the sound of his retching - it also means that the dietitian's current plan is an epic fail - again.
And I just wish, just for a moment, that it were something as simple, as benign, as short lived, as a tummy bug - this one's been going for 4 1/2 years and counting!
And so I find kindred spirits with other 'adventure parenting' parents. When my friend with a kid with Type 1 diabetes posts about just wishing she could go to bed but it's going to be a long night monitoring blood sugars I understand some of that worry and exhaustion. When I find myself doing a complete bedding and pj change for T at 1am because the medicine port on his tube has opened and we have a bed of 'tummy junk' to clean up I find other parents who know what it means when you say you 'fed the bed' that night.
When the house is alive with the sound of retching then there's probably someone else out there who knows what that's like - or even wishes her child could retch!
Normally we just keep on trudging forwards, one foot in front of the other. But I'm usually thankful for the fact that while we might be constantly fighting fires it's only one kid at a time.
But right now we're fighting fires with all the kids.
W is struggling with the increase in workload that secondary requires of him - more to the point he's struggling with the changes in routine that entails! Because of other factors I haven't managed his transition at all well and he's been very distressed at times.
We also continue to battle bureaucrats, many of whom appear to be unable to read as they don't apply the documentary evidence we supplied - or even acknowledge it's existence!
N has significantly deteriorated in the past months and every time we think we might be getting somewhere with him or for him - another door slams in our face. We are not only going round and round the medical bush but it's requiring extensive research to actually try and get some handle on what options there are to help. Right now we're holding our breath to see what another doctor says, a doctor it seems who is probably the only person in the country to be able to help him otherwise we'll have to look overseas.
Through all of this I've said thank goodness T is going well, T is fine. Until last week that is when I got a call telling me his iron levels are an issue again. He ought to be getting way more than enough iron in his feeds never mind his food he's eating - so why is it so low?
In the past it's happened alongside reflux - so bleeding in the oesophagus; his complications from his previous surgeries - so probably something to do with the adhesions, tearing in his stomach round his tube etc.
But this time there's no obvious reason. I will find out soon if they've dropped since December's tests and if so by how much and thankfully he has a routine paed appointment coming up this week - but we wanted to use that to push things along for N who sees the same paed!
And so, these days I am simply overwhelmed and worried much of the time. For the first time it's spilling over into my dreams, in the few hours of rest I have I'm arguing with doctors, composing letters or consulting with people in my sleep. I wake up just about as tired as I was when I went to bed.
There needs to be safety standards in 'adventure parenting' I think!
Things like the country running out of N's formula yet again and finding out there's a 6 week delay in supply ought to be against the safety standards.
Sometimes, like John Key, I wish I could give this job to someone else.
So, rather than extended breastfeeding being the bar to jump, I do sometimes wonder - am I mom enough for all this? Is anyone?
Friday, March 9, 2012
Achy Breaky Heart
N's eating has become a mission once again.
A major mission.
In late Nov-early Dec he suddenly stopped eating once again.
Some of the issue was caused by trying a non-stimulant ADHD med which had the side-effect of nasty stomach pains - like wake him from a sound sleep crying level pain. But we'd tried the new med, in part, because he'd stopped eating.
Since switching back to his usual med I have managed to get his usual 15-20g of rice bubbles, sugar and milk re instituted as breakfast. But basically that's all he's eating.
Thank heavens for Ensure!
But even getting that into him can be a battle and as a result he lost 1 kg in the past month.
I'd requested a paed dietitian referral at the start of this year - before he lost the weight. Once he'd lost it I emailed the dietitian because I hadn't heard from the hospital or got an appointment yet.
I had her email as she and I have worked extensively together over T and so I asked if we could make T's upcoming appointment for N instead as T was doing well at the moment.
So yesterday was the day.
Thanks to the vagaries of different scales, winter clothes instead of summer ones and a good lot of constipation in the past few days N managed to clock in 800g heavier than he was 2 days earlier. This means instead of being plotted below the 3rd centile where he really is, he's been plotted on the 5th for weight and so the verdict was 'he's growing well thanks to the Ensure'. Actually, weighing the same as he did in July last year ISN'T growing well for an 11 yr old, and his height should be climbing more rapidly too at his age - and it's not.
He gets tired rapidly and weepy and always complaining of being cold - so not really doing well at all.
But the really heart-breaking thing was when the dietitian was talking to him. He'd gone in scared about demands being put on him anyway, either more drink, or to eat.
Her proposal was for N to try tastes only of food. A single mouthful - swallowing is optional!
The only mandatory thing is actually drinking all his Ensure.
As she started talking he put his head down, he brought his feet up, he hunched his shoulders to his ears.
I couldn't see his face (she could) but I could hear his voice shaking as he answered questions - and proposed reasons on why this proposal might not work.
She commented to him that she could see the idea scared him but it's literally only one mouthful and he can have the choice over which part of the family meal it is and if he swallows it or not.
It is also limited to a taste only - even if he wants more - because N has an outstanding track record in sabotaging himself whether he means to or not. He'll get all fired up about dinner, drink his Ensure like crazy to get to dinner - and then wind up so nauseated there's no way he could manage anything - and very reluctant to drink the next day!
But it is so sad, so heart-breaking to see him so scared about something so minor and so normal.
I wanted to scoop him up in a huge hug at that moment and rock him like you do a startled infant.
What an awful journey we've travelled to get to this point! The poor poor kid.
He wants to try, wants to eat but just never ever ever follows through and certainly not reliably.
And so as we very very slowly overcome this fear (and I caught a glimpse through this of just how long a road winds before us) the next challenge will be dealing with the drink volume issue - the need to nag to get it down and later, as we make progress, the need to decrease the drink to help encourage the emergence of an appetite and interest - something N hasn't done for 4 years 4 months and counting - but prior to him actually being able to eat enough. So we are going to have to investigate (again!) alternative delivery methods - and soon because the way things are he is simply unable to attend school.
He needs a year of ordinary school before starting secondary. I've always said that and our experiences with W have simply confirmed that opinion at a professional level - and shown how long the battle to get appropriate services actually is. It has taken us 7 1/2 months to finally achieve what we wanted and needed for W and even though they have said he can do Correspondence I'm yet to have any contact from anyone let alone any work for him!!
It's now well into March and so if we are to have N ready - and/or fight the needed battles - we have to start shortly!
I have said for some time that his issue is a fear issue, just as I have also said that I can work with him and get him through this myself - if only I have the right tools.
So, as we essentially have W sorted for a few months anyway, N is the next cab off the rank in the on-going sagas.
Wish us luck! As I have said to the boys - when it comes down to something I really believe I'm right about and it is in their interests I haven't lost a battle yet. This one, yet again, is too important to lose.
A major mission.
In late Nov-early Dec he suddenly stopped eating once again.
Some of the issue was caused by trying a non-stimulant ADHD med which had the side-effect of nasty stomach pains - like wake him from a sound sleep crying level pain. But we'd tried the new med, in part, because he'd stopped eating.
Since switching back to his usual med I have managed to get his usual 15-20g of rice bubbles, sugar and milk re instituted as breakfast. But basically that's all he's eating.
Thank heavens for Ensure!
But even getting that into him can be a battle and as a result he lost 1 kg in the past month.
I'd requested a paed dietitian referral at the start of this year - before he lost the weight. Once he'd lost it I emailed the dietitian because I hadn't heard from the hospital or got an appointment yet.
I had her email as she and I have worked extensively together over T and so I asked if we could make T's upcoming appointment for N instead as T was doing well at the moment.
So yesterday was the day.
Thanks to the vagaries of different scales, winter clothes instead of summer ones and a good lot of constipation in the past few days N managed to clock in 800g heavier than he was 2 days earlier. This means instead of being plotted below the 3rd centile where he really is, he's been plotted on the 5th for weight and so the verdict was 'he's growing well thanks to the Ensure'. Actually, weighing the same as he did in July last year ISN'T growing well for an 11 yr old, and his height should be climbing more rapidly too at his age - and it's not.
He gets tired rapidly and weepy and always complaining of being cold - so not really doing well at all.
But the really heart-breaking thing was when the dietitian was talking to him. He'd gone in scared about demands being put on him anyway, either more drink, or to eat.
Her proposal was for N to try tastes only of food. A single mouthful - swallowing is optional!
The only mandatory thing is actually drinking all his Ensure.
As she started talking he put his head down, he brought his feet up, he hunched his shoulders to his ears.
I couldn't see his face (she could) but I could hear his voice shaking as he answered questions - and proposed reasons on why this proposal might not work.
She commented to him that she could see the idea scared him but it's literally only one mouthful and he can have the choice over which part of the family meal it is and if he swallows it or not.
It is also limited to a taste only - even if he wants more - because N has an outstanding track record in sabotaging himself whether he means to or not. He'll get all fired up about dinner, drink his Ensure like crazy to get to dinner - and then wind up so nauseated there's no way he could manage anything - and very reluctant to drink the next day!
But it is so sad, so heart-breaking to see him so scared about something so minor and so normal.
I wanted to scoop him up in a huge hug at that moment and rock him like you do a startled infant.
What an awful journey we've travelled to get to this point! The poor poor kid.
He wants to try, wants to eat but just never ever ever follows through and certainly not reliably.
And so as we very very slowly overcome this fear (and I caught a glimpse through this of just how long a road winds before us) the next challenge will be dealing with the drink volume issue - the need to nag to get it down and later, as we make progress, the need to decrease the drink to help encourage the emergence of an appetite and interest - something N hasn't done for 4 years 4 months and counting - but prior to him actually being able to eat enough. So we are going to have to investigate (again!) alternative delivery methods - and soon because the way things are he is simply unable to attend school.
He needs a year of ordinary school before starting secondary. I've always said that and our experiences with W have simply confirmed that opinion at a professional level - and shown how long the battle to get appropriate services actually is. It has taken us 7 1/2 months to finally achieve what we wanted and needed for W and even though they have said he can do Correspondence I'm yet to have any contact from anyone let alone any work for him!!
It's now well into March and so if we are to have N ready - and/or fight the needed battles - we have to start shortly!
I have said for some time that his issue is a fear issue, just as I have also said that I can work with him and get him through this myself - if only I have the right tools.
So, as we essentially have W sorted for a few months anyway, N is the next cab off the rank in the on-going sagas.
Wish us luck! As I have said to the boys - when it comes down to something I really believe I'm right about and it is in their interests I haven't lost a battle yet. This one, yet again, is too important to lose.
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