"Don't it always seem to go
That you don't know what you've got
Til it's gone.
They paved paradise
And put up a parking lot"
Joni Mitchell - Big Yellow Taxi.
This is something I've pondered on and off for years - do you really only appreciate what you've got when you've either lost it or had to fight hard for it? Can you truly appreciate something without having to suffer for it?
My ponderings have really come to a head after a few things - some have been kid related as usual but the other thought developers have come from a particularly interesting sermon at church recently and closely followed by a religious radio program where, on this occasion, they interviewed the Dean of Christchurch Cathedral here in New Zealand.
I know we have a few overseas readers here so a very quick re-cap - Christchurch has been hit by 3 massive earthquakes since Sept last year.There has been huge devastation, lives lost in the Feb quake, the centre of the city largely destroyed as well as whole suburbs. In the Feb quake his Cathedral was significantly damaged - to the point of almost certainly needing demolition and rebuilding. This is a historic, beautiful building in the heart of the city and one of the city's iconic emblems, the spirit of Christchurch some would say. In the recent June quake it was further damaged and one of the few remaining pieces they had hoped to take and incorporate in a new building, the rose window, fell and was destroyed.
The Dean's interview was all about what he believed in, trusted in and as inevitably would emerge - Where is God in the earthquakes. His simple but profound response was - In the People.
How they behaved, reacted, helped and supported each other, with the love and growth which was going on through such despair.
The sermon earlier the same morning started off on a much wider premise - looking at the change in wording in many of the parts of the Mass we say. One of these was where we now say Jesus went to Hell - and then the prayer carries on. But the part that caught me was the slant on Jesus going to Hell, that he has suffered too, and although suffering would be much better if it didn't happen at all there is something to gain, growth of some kind and that although it can be Hell Jesus has been there too.
My mind, and I don't know if it was intended by Fr James or not, went to the expression of 'going to Hell and back', that God has been there, is there, and can be there with us.
I know that often on a Sunday, my simple prayer is for the strength and guidance and courage to get through whatever the next week throws at me. Some weeks I know roughly what that is with the stack of appointments up ahead of us, other weeks I have no idea at all but can feel that I'm running low within myself and need that extra support, boosting hand to get up and just keep on going.
Now, neither of the clergy said that it was good to suffer, simply that it is a fact of life. Neither of them said that good always come from the suffering either - that'd be a major switch off point for me because I can't see any good from a number of situations I can think of.
But they did say good, growth, new learning and development can come from the suffering.
And that got me wondering if, in fact, we really only truly appreciate things when either we've had to fight incredibly hard for them or lost them, possibly lost and re-gained.
In a big picture look I'm sure I don't truly appreciate the ability to do largely as I want as I would do if I had been in a war-torn country, dictatorship etc.
Closer to home I'm sure I don't really appreciate the fact that clean water will easily come from the tap when I turn it on, that I flick on a light switch and expect power, that I don't think twice about flushing the toilet.
I know every parent cheers on their children's new milestones, especially their gross motor ones - but would I still have etched in my mind's eye W's first staggery crawling and walking efforts if he hadn't had to battle so hard to achieve that? N and T didn't have to work so hard for that one and I can't remember exactly where they were when they started but I can with W. Part of that is first child syndrome - but a large part is the battle, the hard work and constant practice we both did to get him there.
I know every parent worries when their child is sick - but would I appreciate seeing a kid literally bouncing around with energy and health the way I do if T hadn't have been so lacking so often for so long?
The wonderous event when 'it's just a cold' actually is just a cold not leading into croup, ear infections, antibiotics, reflux flares, decreased eating, weight loss and then literally months to claw your way back to where they were before the 'cold'?
Tonight was a milestone which I know many other parents out there take for granted but it has been hard fought and so rarely experienced - both T and N left empty plates! They both only had 100g of dinner so nowhere near enough to actually live on but it is incredibly rare to have a meal where everyone finishes!
Needless to say I'll be making that dinner again.
Simply watching T eat a dinner like tonight's is still something I get simple pleasure from - it is only a few months ago when we were looking at the distinct possibility that he wasn't going to be able to eat solid food for a considerable length of time. Certainly I didn't appreciate the importance of solid food and all it's calories, energy, health and strength giving abilities until I was constantly locked in a battle to keep weight on T on tube feeds and soft/purees only. Never before have I appreciated the wonders of a child eating a fish finger!
So did it have to take losing these things, having to work way too hard for these things, to truly appreciate them? Are there little 'blessings' (for lack of a better word) in our everyday lives we'd never properly appreciate until they were threatened or we actually lose them?
I don't know.
I know that so much of my life is spend in filling in deficits for the kids, by necessity seeing what is wrong, that it has to be good to stop, smell the flowers and see what is right, what they can do and what they do have on occasions. To enjoy paradise before they put up a parking lot as per the song snippet at the start.
As for what good has come from any of these experiences, these losses or threatened losses - that's definitely a matter for another post. I know I have gained and grown and that in many many ways the boys would not necessarily be the people they are if they hadn't had these experiences either but I also wish with every fibre in my being that many of them had never happened to.
Do we need to lose something to truly appreciate it?
I don't know.
I'd hope not but suspect it's true in many areas.
Let's all try to take a moment to enjoy the odd corners of paradise before it's paved.
"Don't it always seem to go
That you don't know what you've got
Til it's gone.
They paved paradise
And put up a parking lot"
Joni Mitchell - Big Yellow Taxi.
Our on-going saga with life with 3 prematurely born boys. The fun doesn't end at the NICU door, even for 'late' preemies.
Saturday, July 9, 2011
Wednesday, June 15, 2011
13 Years on
13 years - what a milestone!
What a life time really!
What experiences - good and bad.
What a roller coaster and marathon all in one.
It is mindblowing really to think back on where I as a person, and we as a family were at 13 years ago.
So much has changed, not been as we'd expected, planned, hoped. So much growth has happened - not necessarily in ways I'd have thought of but have paid off in so many directions. So many pre-conceived ideas have been rudely, abruptly and often slowly, painfully and thoughtfully thrown out the window.
Why 13 years?
W, my eldest turned 13 today.
13, the start of the teens is a big milestone in anyone's life but it's also a pause for the parents and a moment of "Crap! Have we really been at this lark that long??!"
13 years ago today both he and I were hanging on to life - both in question.
I improved and they relaxed.
But the scramble has been on-going with W. Doctors, paeds, dietitians, tests, OTs, physios, SLTs, meds, apnoea monitors, food diaries, weigh-ins, missed milestones, the hailstorm of diagnosis after diagnosis.
Things have slowed over the years with W if that's any reassurance to others at the brutal starting point of this ultra marathon. Out of the 35+ appointments the boys have had since the middle of Jan this year only a very small handful have been related to W.
I do have to make an appointment with Special Ed to discuss W's secondary schooling but I refuse to do that in his birthday week. I want the momentary oasis.
It annoyed the hell out of me, as a realistically and rightfully worried prem mum, to be constantly told of 6ft prems and not to worry they all grow eventually.
For those reading this who are NOT prem parents - DO NOT tell people about the boy down the road who did this. It will drive crazy rather than reassure because it IS the exception not the rule.
Having said that - I'm in danger of actually having the proverbial 6ft preemie!
But not without years of blood, sweat, toil, research, hassling doctors, high cal supplements and tears.
My 3lb 14 oz or 1.795kg baby who was only 34 cm long is now around 50kg and 170.5cm tall and increasing every day by the looks of him.
The contrast between the 2 year old who weighed 10kg and ran crying from food to W now who is always on the scrounge for food is incredible.
I guess if you play chicken long enough someone has to blink so if you stay firm it's not going to be you.
I never thought that parenting was going to be THIS kind of endurance race. I knew it'd be hard, try your patience, you'd be tired, frustrated at times, worried at times but not quite like it's been for us.
I wanted to be a mother - not a doctor, nurse, therapist, teacher.
I did not want to get to the point where we were today when I took T in to the doctor and said I thought he had a tube infection, she took one look and agreed and wrote the script for antibiotics. Didn't even need to swab. Even T knows enough these days - he specifically asked for ones that didn't need an empty tummy and could go down his tube.
But you know what?
I've gained so much too - the appreciation for every tiny milestone - sure not every mother celebrates the fact their kid can breathe on their own but knowing how a sat monitor works has been very useful!
Every mother celebrates their child pulling to a stand, crawling, sitting walking - but not everyone's watched every little component of that skill battled for with physios and home therapy.
Every mother would be very proud of their child getting a distinction and 81 % in their first ever piano exam - but not everyone also watched the same child aged 4 struggle in OT sessions to make one of his hands work the way they wanted.
I've gained incredible research skills and interpersonal communication skills, between multiple disciplines - and taught a few experts a hing or two - and even to treat me as a dumb mum at their peril!
A few medical specialists even treat me as an equal partner in the team - as I am.
Every mother will stand and fight for their kids - but the fights we have fought have often been far-reaching, significant and important.
I am more battle weary than I ever thought possible, more tired now despite not having a newborn, and some times just jaded from the constant on-slaught.
But I am a stronger person, a changed and different person, often learnt to try and find the quiet, the good moments, and what really counts - trying not to sweat the small stuff.
I have also learnt to see and appreciate the incredible strength, resilience, determination and absolute inner beauty of my boys. There can be sheer triumph in tiny achievements.
Today when we celebrated W's birthday with a fast food dinner between the older two's swimming and W's soccer practice - T managed to eat almost an entire children's meal. Yes, he's 6 and yes, I then hooked him up to his night tube feed in the carpark but he's NEVER done that before.
There can be sheer triumph in tiny achievements!
And so to W - from my tiny, might not make it 24 hours, first born, struggling through so many hoops with pride and dignity - I'm sure there are many more hoops to come, no I might not be able to be there, wearing the knees out of my jeans as I teach you to crawl, but I will be there with you to the best of my ability - as I know you will to yours. You have risen to every challenge, struggled through and triumphed as best you possibly can.
And we will cheer you on!
To an amazing 13 years of growth - many the next 13 be just as amazing - but easier!
What a life time really!
What experiences - good and bad.
What a roller coaster and marathon all in one.
It is mindblowing really to think back on where I as a person, and we as a family were at 13 years ago.
So much has changed, not been as we'd expected, planned, hoped. So much growth has happened - not necessarily in ways I'd have thought of but have paid off in so many directions. So many pre-conceived ideas have been rudely, abruptly and often slowly, painfully and thoughtfully thrown out the window.
Why 13 years?
W, my eldest turned 13 today.
13, the start of the teens is a big milestone in anyone's life but it's also a pause for the parents and a moment of "Crap! Have we really been at this lark that long??!"
13 years ago today both he and I were hanging on to life - both in question.
I improved and they relaxed.
But the scramble has been on-going with W. Doctors, paeds, dietitians, tests, OTs, physios, SLTs, meds, apnoea monitors, food diaries, weigh-ins, missed milestones, the hailstorm of diagnosis after diagnosis.
Things have slowed over the years with W if that's any reassurance to others at the brutal starting point of this ultra marathon. Out of the 35+ appointments the boys have had since the middle of Jan this year only a very small handful have been related to W.
I do have to make an appointment with Special Ed to discuss W's secondary schooling but I refuse to do that in his birthday week. I want the momentary oasis.
It annoyed the hell out of me, as a realistically and rightfully worried prem mum, to be constantly told of 6ft prems and not to worry they all grow eventually.
For those reading this who are NOT prem parents - DO NOT tell people about the boy down the road who did this. It will drive crazy rather than reassure because it IS the exception not the rule.
Having said that - I'm in danger of actually having the proverbial 6ft preemie!
But not without years of blood, sweat, toil, research, hassling doctors, high cal supplements and tears.
My 3lb 14 oz or 1.795kg baby who was only 34 cm long is now around 50kg and 170.5cm tall and increasing every day by the looks of him.
The contrast between the 2 year old who weighed 10kg and ran crying from food to W now who is always on the scrounge for food is incredible.
I guess if you play chicken long enough someone has to blink so if you stay firm it's not going to be you.
I never thought that parenting was going to be THIS kind of endurance race. I knew it'd be hard, try your patience, you'd be tired, frustrated at times, worried at times but not quite like it's been for us.
I wanted to be a mother - not a doctor, nurse, therapist, teacher.
I did not want to get to the point where we were today when I took T in to the doctor and said I thought he had a tube infection, she took one look and agreed and wrote the script for antibiotics. Didn't even need to swab. Even T knows enough these days - he specifically asked for ones that didn't need an empty tummy and could go down his tube.
But you know what?
I've gained so much too - the appreciation for every tiny milestone - sure not every mother celebrates the fact their kid can breathe on their own but knowing how a sat monitor works has been very useful!
Every mother celebrates their child pulling to a stand, crawling, sitting walking - but not everyone's watched every little component of that skill battled for with physios and home therapy.
Every mother would be very proud of their child getting a distinction and 81 % in their first ever piano exam - but not everyone also watched the same child aged 4 struggle in OT sessions to make one of his hands work the way they wanted.
I've gained incredible research skills and interpersonal communication skills, between multiple disciplines - and taught a few experts a hing or two - and even to treat me as a dumb mum at their peril!
A few medical specialists even treat me as an equal partner in the team - as I am.
Every mother will stand and fight for their kids - but the fights we have fought have often been far-reaching, significant and important.
I am more battle weary than I ever thought possible, more tired now despite not having a newborn, and some times just jaded from the constant on-slaught.
But I am a stronger person, a changed and different person, often learnt to try and find the quiet, the good moments, and what really counts - trying not to sweat the small stuff.
I have also learnt to see and appreciate the incredible strength, resilience, determination and absolute inner beauty of my boys. There can be sheer triumph in tiny achievements.
Today when we celebrated W's birthday with a fast food dinner between the older two's swimming and W's soccer practice - T managed to eat almost an entire children's meal. Yes, he's 6 and yes, I then hooked him up to his night tube feed in the carpark but he's NEVER done that before.
There can be sheer triumph in tiny achievements!
And so to W - from my tiny, might not make it 24 hours, first born, struggling through so many hoops with pride and dignity - I'm sure there are many more hoops to come, no I might not be able to be there, wearing the knees out of my jeans as I teach you to crawl, but I will be there with you to the best of my ability - as I know you will to yours. You have risen to every challenge, struggled through and triumphed as best you possibly can.
And we will cheer you on!
To an amazing 13 years of growth - many the next 13 be just as amazing - but easier!
Friday, May 27, 2011
The Two Step Shuffle...
Or maybe that should be two steps forwards, one step back...
It feels like so much of the time with the kids.
T has finally been able to switch to a button from his long tube. He is revelling in the liberation - time on the trampoline, faster feeds, not having to be careful of the connection between the gastrostomy tube and the feeding pump tubing, longer tubing so a longer 'leash' while he's being fed too.
I'm enjoying not worrying about the join between the tubing too, not fluffing around with sticky first aid tape trying to keep two bits of tubing pushed into place, while also pinching the gastrostomy tube shut and of course wrapping the tape around without it sticking to itself!
What kind of complete idiot decided it was a good idea to design a tube which inevitable contain stomach contents/acid/electrolytes etc but NOT include a clamp in the design still eludes me but I checked on their web site out of curiosity and the MIC gastrostomy tube definitely does not include a clamp, only the extension tubes for the MIC-KEY low profile button. All I can say is who ever designed it never had to use it and certainly never had to use it on a child!
The switch over from tube to button was a pretty horrendous mission but T seems to have recovered. He was very unhappy about it being used at all and we've still to figure out a way to hook him up without him lying down first, but he's much happier about it all now.
I was really looking forward to it, not only for the lack of dexterity challenges 6 times a day (got to do it all in reverse at the feed's end) but also so that I could speed his feeds up and make serious progress on the eating front. However that's where the step backwards part kicks in!
I cheerfully increased his flow rate from 150ml/hr which had been the maximum we could safely run the pump before without a tubing blow-out, to 200ml/hr. No probs - cool! So I sat there and figured if we can increase by 50 ml day then we'll be back to our pre-op level of 400ml/hr by this Sunday.
250 mls and no issues with a morning feed, come afternoon and it's a different story. T was nauseated and threatening to retch. Longish term followers of this saga will know that retching is territory I NEVER want to see again so my heart plummeted.
But he didn't start complaining until almost the end of the feed so I tried to stifle my fears but ditched the flow rate increase for the next day. That was today and although we had no complaints of pain or nausea today he was completely disinterested in dinner - didn't even touch his cranberry juice which is very very unusual for him. He hadn't finished his afternoon tea either which, considering it was a freshly baked brownie - is also a red flag. He said his tummy was still full - physiologically exceedingly unlikely. So I suspect his tummy is still a little bothered by the increased flow rate.
It's not too surprising. The surgery, although we think of it as just closing one hole in his tummy and making another, WAS gastric surgery and I'd guess the old stoma is sensitive and things may not feel so comfy as it stretches and pulls as his tummy fills. The surgery was only 6 weeks ago today.
And so I'll hold off on another flow rate increase tomorrow - so much for 400ml/hr by Sunday. Still we are at 250mls which is an increase of 100ml/hr since Tuesday!
His eating is patchy, has been ever since the op. I'd put it down to the long slow feeds stifling appetite but that trend still seems to be continuing. He had 5 fish fingers for lunch today - something which would have only happened on a good day BEFORE the gloopies hit. But then no dinner.
Hopefully this is just a recovery wobble and not a sign of future issues.
On reflection of course I have no idea what he could actually TOLERATE pre-op. Feeds routinely ended in retching and misery. I only had him running so fast pre-op because he'd start retching about 20 mins into the feed and 20 mins into a slower feed left a lot more feed to go down. A fast feed meant the retching started when the end was in sight and the retching didn't seem any worse.
Maybe 250mls is where he's okay??
If so I'll have to be pretty precise with timings so that he has at least 2 hours between feeds and meals - oh goodie, back on the treadmill!
And then we have N.
I thought he was making progress - no I know he was making progress - it's recorded in his food diaries.
It's so easy to focus on that particular day and not see the patterns - the food diaries are good for that.
After months and months of breakfast being a battle ground when it had been a regular, eaten feature - we finally have breakfast back. I was even getting some increases in volume at breakfast time.
I was even getting a little of something eaten at every meal mostly - more often than not!
Sure, seriously not enough, not to survive on, not a balanced diet - but still it was food going in!
And we've had a run of days with virtually nothing eaten, grumpy, obnoxious, horrible behaviour, stupidity over schoolwork and just generally every day put you through the wringer.
However not all is lost - it's the 2 steps forwards, 1 backwards thing again.
I have noticed when he stops eating it's for a shorter time period these days.
I'm also getting an increase in volume in his dinners - I weigh his meals before and after and even 3 months ago we were lucky to get 80g of anything into him. These days more normal is 100g and yesterday he clocked up 200g and tonight 150g.
Yes, there are regularly days when all he'll have is a nibble of roast potato and call it dinner but the wider picture is showing some improvement.
The other improvement I've seen which really does excite me is a growing awareness of his own needs.
He's commented on occasions that his tummy is grumbling.
He's commented he is really hungry - and not in a grandstanding, see how loud I can shout it to attract attention and because it's the worst possible time to make a spectacle, but in a "Gee I'm glad it's dinner time because I'm really hungry" kind of way.
He's also commented twice now when he has a headache coming on and that he'd better get himself a Fortisip. His new found awareness has warded off a retching spell at least twice now.
And just as I see some light at the end of the tunnel I know we have an on-coming derailment.
In their wisdom Pharmac, our drug buying company here in NZ, have cut the subsidy on oral high cal pre-mixed drinks in favour of powdered formulations. So for N that means that, when I call the pharmacy tomorrow I will be ordering his last repeat of Fortisip.
After that he will switch to a powder formula called Ensure. He hates the stuff.
Just to add to the 'fun' it's only 1 cal per ml. Fortisip is 1.5 cal per ml.
N is drinking 1 litre of Fortisip a day on a good day, an extra 200 ml on a bad day.
So he'll have to drink 1.5 litres of Ensure a day on a good day, just to maintain where he's at.
Where he's at right now has seen him have increased and improved growth and weight gain. It's seen better focus on things, generally improved behaviour, better health, faster healing and so on.
This is something I really want to maintain. I also really want to maintain the slow but happening increments in his eating.
I know, because we tried Ensure before, that what I will have is a battle to get him to drink any of it and a total lack in appetite due to drowning in the wretched supplement.
We stand to lose all the little we've gained so far.
I breaks my heart to stand and watch the crash happening in slow motion but there is NOTHING I can do to stop this.
He has to drink the stuff to stay well, growing and safe. But he won't and even if he does he won't want to eat.
I'll get him weighed again in a week and then again at the end of the Fortisip at the end of June. I'll get his weight monitored more closely by the GP in the intervening months and see the paed in August - assuming the wheels haven't fallen off badly in the meantime in terms of his weight. We then see this other doc who is the expert in eating disorders but honestly - if it's the product we have to use causing the increased problem then I can't see what she can do to help with it.
I know what we'll see in terms of the food consumed and all the other good things which have been happening. And I can't see any way out that doesn't involve surgery for N. All I can do is hope and pray that the intervening months while we have to let him deteriorate won't severely damage his slight progress in eating and attitude towards it.
It feels like so much of the time with the kids.
T has finally been able to switch to a button from his long tube. He is revelling in the liberation - time on the trampoline, faster feeds, not having to be careful of the connection between the gastrostomy tube and the feeding pump tubing, longer tubing so a longer 'leash' while he's being fed too.
I'm enjoying not worrying about the join between the tubing too, not fluffing around with sticky first aid tape trying to keep two bits of tubing pushed into place, while also pinching the gastrostomy tube shut and of course wrapping the tape around without it sticking to itself!
What kind of complete idiot decided it was a good idea to design a tube which inevitable contain stomach contents/acid/electrolytes etc but NOT include a clamp in the design still eludes me but I checked on their web site out of curiosity and the MIC gastrostomy tube definitely does not include a clamp, only the extension tubes for the MIC-KEY low profile button. All I can say is who ever designed it never had to use it and certainly never had to use it on a child!
The switch over from tube to button was a pretty horrendous mission but T seems to have recovered. He was very unhappy about it being used at all and we've still to figure out a way to hook him up without him lying down first, but he's much happier about it all now.
I was really looking forward to it, not only for the lack of dexterity challenges 6 times a day (got to do it all in reverse at the feed's end) but also so that I could speed his feeds up and make serious progress on the eating front. However that's where the step backwards part kicks in!
I cheerfully increased his flow rate from 150ml/hr which had been the maximum we could safely run the pump before without a tubing blow-out, to 200ml/hr. No probs - cool! So I sat there and figured if we can increase by 50 ml day then we'll be back to our pre-op level of 400ml/hr by this Sunday.
250 mls and no issues with a morning feed, come afternoon and it's a different story. T was nauseated and threatening to retch. Longish term followers of this saga will know that retching is territory I NEVER want to see again so my heart plummeted.
But he didn't start complaining until almost the end of the feed so I tried to stifle my fears but ditched the flow rate increase for the next day. That was today and although we had no complaints of pain or nausea today he was completely disinterested in dinner - didn't even touch his cranberry juice which is very very unusual for him. He hadn't finished his afternoon tea either which, considering it was a freshly baked brownie - is also a red flag. He said his tummy was still full - physiologically exceedingly unlikely. So I suspect his tummy is still a little bothered by the increased flow rate.
It's not too surprising. The surgery, although we think of it as just closing one hole in his tummy and making another, WAS gastric surgery and I'd guess the old stoma is sensitive and things may not feel so comfy as it stretches and pulls as his tummy fills. The surgery was only 6 weeks ago today.
And so I'll hold off on another flow rate increase tomorrow - so much for 400ml/hr by Sunday. Still we are at 250mls which is an increase of 100ml/hr since Tuesday!
His eating is patchy, has been ever since the op. I'd put it down to the long slow feeds stifling appetite but that trend still seems to be continuing. He had 5 fish fingers for lunch today - something which would have only happened on a good day BEFORE the gloopies hit. But then no dinner.
Hopefully this is just a recovery wobble and not a sign of future issues.
On reflection of course I have no idea what he could actually TOLERATE pre-op. Feeds routinely ended in retching and misery. I only had him running so fast pre-op because he'd start retching about 20 mins into the feed and 20 mins into a slower feed left a lot more feed to go down. A fast feed meant the retching started when the end was in sight and the retching didn't seem any worse.
Maybe 250mls is where he's okay??
If so I'll have to be pretty precise with timings so that he has at least 2 hours between feeds and meals - oh goodie, back on the treadmill!
And then we have N.
I thought he was making progress - no I know he was making progress - it's recorded in his food diaries.
It's so easy to focus on that particular day and not see the patterns - the food diaries are good for that.
After months and months of breakfast being a battle ground when it had been a regular, eaten feature - we finally have breakfast back. I was even getting some increases in volume at breakfast time.
I was even getting a little of something eaten at every meal mostly - more often than not!
Sure, seriously not enough, not to survive on, not a balanced diet - but still it was food going in!
And we've had a run of days with virtually nothing eaten, grumpy, obnoxious, horrible behaviour, stupidity over schoolwork and just generally every day put you through the wringer.
However not all is lost - it's the 2 steps forwards, 1 backwards thing again.
I have noticed when he stops eating it's for a shorter time period these days.
I'm also getting an increase in volume in his dinners - I weigh his meals before and after and even 3 months ago we were lucky to get 80g of anything into him. These days more normal is 100g and yesterday he clocked up 200g and tonight 150g.
Yes, there are regularly days when all he'll have is a nibble of roast potato and call it dinner but the wider picture is showing some improvement.
The other improvement I've seen which really does excite me is a growing awareness of his own needs.
He's commented on occasions that his tummy is grumbling.
He's commented he is really hungry - and not in a grandstanding, see how loud I can shout it to attract attention and because it's the worst possible time to make a spectacle, but in a "Gee I'm glad it's dinner time because I'm really hungry" kind of way.
He's also commented twice now when he has a headache coming on and that he'd better get himself a Fortisip. His new found awareness has warded off a retching spell at least twice now.
And just as I see some light at the end of the tunnel I know we have an on-coming derailment.
In their wisdom Pharmac, our drug buying company here in NZ, have cut the subsidy on oral high cal pre-mixed drinks in favour of powdered formulations. So for N that means that, when I call the pharmacy tomorrow I will be ordering his last repeat of Fortisip.
After that he will switch to a powder formula called Ensure. He hates the stuff.
Just to add to the 'fun' it's only 1 cal per ml. Fortisip is 1.5 cal per ml.
N is drinking 1 litre of Fortisip a day on a good day, an extra 200 ml on a bad day.
So he'll have to drink 1.5 litres of Ensure a day on a good day, just to maintain where he's at.
Where he's at right now has seen him have increased and improved growth and weight gain. It's seen better focus on things, generally improved behaviour, better health, faster healing and so on.
This is something I really want to maintain. I also really want to maintain the slow but happening increments in his eating.
I know, because we tried Ensure before, that what I will have is a battle to get him to drink any of it and a total lack in appetite due to drowning in the wretched supplement.
We stand to lose all the little we've gained so far.
I breaks my heart to stand and watch the crash happening in slow motion but there is NOTHING I can do to stop this.
He has to drink the stuff to stay well, growing and safe. But he won't and even if he does he won't want to eat.
I'll get him weighed again in a week and then again at the end of the Fortisip at the end of June. I'll get his weight monitored more closely by the GP in the intervening months and see the paed in August - assuming the wheels haven't fallen off badly in the meantime in terms of his weight. We then see this other doc who is the expert in eating disorders but honestly - if it's the product we have to use causing the increased problem then I can't see what she can do to help with it.
I know what we'll see in terms of the food consumed and all the other good things which have been happening. And I can't see any way out that doesn't involve surgery for N. All I can do is hope and pray that the intervening months while we have to let him deteriorate won't severely damage his slight progress in eating and attitude towards it.
Wednesday, May 11, 2011
The tangled tapestry of life
There are a million thoughts zapping round and this post has largely been sparked by a couple of Face Book conversations today, but also the time of year it is for me - laden with anniversaries as it is.
Parenting is certainly not for the faint hearted.
No one ever said it was going to be easy.
It's one of those things in life you actually have to approach in an emotional way to make a good job of it I think. As T went into surgery recently someone told me not to worry about him - if I wasn't worrying I actually wasn't doing my job.
But how do you manage those emotions, how do you harness them for the good of your parenting and not let them bog you down, stopping the progress which is vital for both you and your child/children in life's journey?
From one of the discussion today which got me thinking I wonder how you even classify emotions - one person's regret is another's grief is another's guilt. Parenting seems to be laden with opportunities for guilt but what is it really? People talk about 'mother guilt' but is guilt really a conglomeration of emotions and not actually a single emotion at all?
The tricky bit to labeling motions is that, by their nature, they aren't rational. You can't pin them down, they squirm and flip away from you under the pin of a label.
'Mother guilt', so called guilt over events, choices, even things which there was no way you could control, rationally you know that, but the shoulda, woulda, couldas will always haunt you.
I think so called guilt, in parenting terms anyway, isn't a true, single, isolatable emotion but a conglomeration.
It's a mixture of many other emotions and probably the primary elements are those of sadness, regret, frustration, anger at the situation you find yourself in, however the situation arose, what ever 'choices' got you there.
Responsibility also sneaks in there. You wouldn't feel these other things if you didn't feel responsible, responsible for this small person entrusted to you, responsible for your decisions and the outcomes - whether they could actually be predicted or not, even if you actually can't be held responsible for the events or outcomes - I told you emotions aren't rational!
Born from this emotion of responsibility I think comes the search which is almost universal in parenting, well good parenting anyway, the constant search for what is best for your particular child. It doesn't actually matter what path you took to become a parent, what hurdles you've jumped, how smooth, medical or otherwise your path has been. It is the search to do the best you can that unites us all.
The impact of the hurdles, how far you actually CAN jump, where your expectations lie, what your hopes and dreams are for that child - that is affected by your path, but not that core desire.
That's why parenting, especially modern parenting is a competitive sport in so many arenas.
Your perception of the size of those hurdles is also shaped by your path and so how much each individual bit impacts on you as you journey through your parenting. For some their biggest hurdle is being able to breast feed or not, for others your child living through another night is it. Some beg, hope, plead and pray that their child will be able to walk, talk, see.
I know that over the past few months with T's eating difficulties, N's have paled in comparison.
I had a child who WANTED to eat - but who couldn't. We were staring down the barrel of very slow continuous tube feeds and virtually no solid food for years to come.
But that doesn't make N's issues any less important, significant - or emotionally important.
It's all relative to the person and child - the molehill in one person's view may well be the biggest mountain that person's ever encountered.
Often people say to me they feel they shouldn't complain/worry/whatever about their child and their issues when so much more is going on for my boys. But their issues do not de-value someone else's mountain, just as my boys' issues are laughable to someone else with a critically ill child - they'd love to swap situations I'm sure.
But it is this emotional journey in parenting, this responsibility, guilt, whatever emotion is popping at that time that affects and guides us to be better parents.
And so when a new problem arises, new research comes out, events change and you realise that decisions you made - even those which were really beyond your control - actually may have laid the groundwork for a new issue, problem, hurdle - you react emotionally.
For those where life is more complex, there is always an element of on-going grief. I don't think you can parent a child with 'differences' without it. It is a constantly evolving spiral. Some times you are further away from it and other times it is brought into sharp relief. It may not even be a new issue or a new face of the same issue which sharpens it up. It can be anniversaries, reminders of what has happened, what could have been.
I spent time today gathering information to start an assessment process for W and I think of what might have been, how different his life could have been if only he hadn't been early. Some times that's just a twinge, other times, like now in the run up to his birthday it's a lot sharper.
I look at T reveling in eating chippies today, a huge grin over his face. Some days that's fantastic to watch, other days it's bitter sweet as I contemplate how different, how unscarred his tummy would have been if only I'd stood my ground when he was a baby, if only the doctor hadn't dropped the ball so badly.
Situations both well out of my control, times when I made the best decisions I could based on what information available at the time - but that drive to do the best I can for the kids sits and niggles.
We gave W a medication for his reflux which carried a risk of cardiac problems. At the times we made the best decision we could. The reflux caused apnoea episodes which the medication reduced. We had the 'choice' of keeping him breathing now and face potential issues later. When it looked like that had come home to roost a couple of years ago I felt dreadful, second-guessing every element of that so-called decision, feeling guilty.
It doesn't have to be a life and death situation like that to trigger that emotional response. It can be triggered in a mother with a child with behaviour issues, health problems, whatever. They were unable, for whatever reason to breast feed, and now research comes out showing reduced risk of the issue they are facing if only they'd breast fed. You can't go back on that decision, you can't change history, there may have been overwhelming medical, physical whatever reasons to totally justify or explain the feeding decision but the emotional response is there, the 'Oh crap, did I cause this? Could life have been different? What have I done?'
This is no reason NOT to put the information out there, but it is a reason for the visceral response so many have to this kind of situation.
I cannot change my kids' premature births, the damage done, the risk factors for all sorts of life long issues they face. But reading the studies, gathering the information still hurts, still leaves me with the woulda, coulda, shouldas, the emotional response. I need the information, I believe in aware, quiet watching, not expecting trouble but knowing the potential pot holes so when a stumble starts I don't wait to see the fall but jump in sooner than I otherwise would. But I don't have to LIKE the information.
Your response is often shaped by where you are on the journey too, I can handle reports of potential risks much better if I don't have a kid fresh from surgery, on the verge of a new issue being diagnosed.
Just as doctors know bad news is often greeted with anger, so those with new studies, research, information need to remember the core drive in parenting - the emotions involved.
Now I search out the information, I can choose when I'm feeling strong enough or need the information right now. So many of the 'humdrum', the 'ordinary' parenting situations are actually blasted in a way that you can't avoid. You can't choose when you are ready to receive the information. When I'm dealing with a really bad ADHD temper tantrum I do not want to open the paper and read some research saying it's diagnosed too freely and it's really bad parenting. That makes me react emotionally. You can't wonder at it really.
But the magic key, as I see it, is what you do with this emotion and how you harness it.
Bad news throws you into a hole. If you stay impossibly chipper all the time you probably aren't actually seeing the situation for what it is, taking it seriously.
You could get mad with the person bringing you the bad news - slinging insults, discrediting them in all sorts of ridiculous ways, sticking your fingers in your ears and lah lah lahing.
You can sit and cry for a while, contemplating the situation, feeling the complex and swirling emotions.
But eventually you have to do something, you have to progress the journey onwards - for your child's sake if not your own.
I personally use that time, after hitting the bottom and acknowledging it, to look at the situation and trying to map out a plan to fix or re-mediate the situation as best you can.
But again, so often, your response is part of your own unique parenting journey - is this the biggest mountain you have to climb? Is this your first stumbling point? Did you even expect a stumbling point in your journey?
In so many ways you also need this emotional fuel to keep moving, it stays with you, as part of your journey.
You don't, you can't let go, move on. It is part of what has shaped and fired your parenting - and all the emotions, in whatever form they come in, are all part of that spiral.
Parenting is certainly not for the faint hearted.
No one ever said it was going to be easy.
It's one of those things in life you actually have to approach in an emotional way to make a good job of it I think. As T went into surgery recently someone told me not to worry about him - if I wasn't worrying I actually wasn't doing my job.
But how do you manage those emotions, how do you harness them for the good of your parenting and not let them bog you down, stopping the progress which is vital for both you and your child/children in life's journey?
From one of the discussion today which got me thinking I wonder how you even classify emotions - one person's regret is another's grief is another's guilt. Parenting seems to be laden with opportunities for guilt but what is it really? People talk about 'mother guilt' but is guilt really a conglomeration of emotions and not actually a single emotion at all?
The tricky bit to labeling motions is that, by their nature, they aren't rational. You can't pin them down, they squirm and flip away from you under the pin of a label.
'Mother guilt', so called guilt over events, choices, even things which there was no way you could control, rationally you know that, but the shoulda, woulda, couldas will always haunt you.
I think so called guilt, in parenting terms anyway, isn't a true, single, isolatable emotion but a conglomeration.
It's a mixture of many other emotions and probably the primary elements are those of sadness, regret, frustration, anger at the situation you find yourself in, however the situation arose, what ever 'choices' got you there.
Responsibility also sneaks in there. You wouldn't feel these other things if you didn't feel responsible, responsible for this small person entrusted to you, responsible for your decisions and the outcomes - whether they could actually be predicted or not, even if you actually can't be held responsible for the events or outcomes - I told you emotions aren't rational!
Born from this emotion of responsibility I think comes the search which is almost universal in parenting, well good parenting anyway, the constant search for what is best for your particular child. It doesn't actually matter what path you took to become a parent, what hurdles you've jumped, how smooth, medical or otherwise your path has been. It is the search to do the best you can that unites us all.
The impact of the hurdles, how far you actually CAN jump, where your expectations lie, what your hopes and dreams are for that child - that is affected by your path, but not that core desire.
That's why parenting, especially modern parenting is a competitive sport in so many arenas.
Your perception of the size of those hurdles is also shaped by your path and so how much each individual bit impacts on you as you journey through your parenting. For some their biggest hurdle is being able to breast feed or not, for others your child living through another night is it. Some beg, hope, plead and pray that their child will be able to walk, talk, see.
I know that over the past few months with T's eating difficulties, N's have paled in comparison.
I had a child who WANTED to eat - but who couldn't. We were staring down the barrel of very slow continuous tube feeds and virtually no solid food for years to come.
But that doesn't make N's issues any less important, significant - or emotionally important.
It's all relative to the person and child - the molehill in one person's view may well be the biggest mountain that person's ever encountered.
Often people say to me they feel they shouldn't complain/worry/whatever about their child and their issues when so much more is going on for my boys. But their issues do not de-value someone else's mountain, just as my boys' issues are laughable to someone else with a critically ill child - they'd love to swap situations I'm sure.
But it is this emotional journey in parenting, this responsibility, guilt, whatever emotion is popping at that time that affects and guides us to be better parents.
And so when a new problem arises, new research comes out, events change and you realise that decisions you made - even those which were really beyond your control - actually may have laid the groundwork for a new issue, problem, hurdle - you react emotionally.
For those where life is more complex, there is always an element of on-going grief. I don't think you can parent a child with 'differences' without it. It is a constantly evolving spiral. Some times you are further away from it and other times it is brought into sharp relief. It may not even be a new issue or a new face of the same issue which sharpens it up. It can be anniversaries, reminders of what has happened, what could have been.
I spent time today gathering information to start an assessment process for W and I think of what might have been, how different his life could have been if only he hadn't been early. Some times that's just a twinge, other times, like now in the run up to his birthday it's a lot sharper.
I look at T reveling in eating chippies today, a huge grin over his face. Some days that's fantastic to watch, other days it's bitter sweet as I contemplate how different, how unscarred his tummy would have been if only I'd stood my ground when he was a baby, if only the doctor hadn't dropped the ball so badly.
Situations both well out of my control, times when I made the best decisions I could based on what information available at the time - but that drive to do the best I can for the kids sits and niggles.
We gave W a medication for his reflux which carried a risk of cardiac problems. At the times we made the best decision we could. The reflux caused apnoea episodes which the medication reduced. We had the 'choice' of keeping him breathing now and face potential issues later. When it looked like that had come home to roost a couple of years ago I felt dreadful, second-guessing every element of that so-called decision, feeling guilty.
It doesn't have to be a life and death situation like that to trigger that emotional response. It can be triggered in a mother with a child with behaviour issues, health problems, whatever. They were unable, for whatever reason to breast feed, and now research comes out showing reduced risk of the issue they are facing if only they'd breast fed. You can't go back on that decision, you can't change history, there may have been overwhelming medical, physical whatever reasons to totally justify or explain the feeding decision but the emotional response is there, the 'Oh crap, did I cause this? Could life have been different? What have I done?'
This is no reason NOT to put the information out there, but it is a reason for the visceral response so many have to this kind of situation.
I cannot change my kids' premature births, the damage done, the risk factors for all sorts of life long issues they face. But reading the studies, gathering the information still hurts, still leaves me with the woulda, coulda, shouldas, the emotional response. I need the information, I believe in aware, quiet watching, not expecting trouble but knowing the potential pot holes so when a stumble starts I don't wait to see the fall but jump in sooner than I otherwise would. But I don't have to LIKE the information.
Your response is often shaped by where you are on the journey too, I can handle reports of potential risks much better if I don't have a kid fresh from surgery, on the verge of a new issue being diagnosed.
Just as doctors know bad news is often greeted with anger, so those with new studies, research, information need to remember the core drive in parenting - the emotions involved.
Now I search out the information, I can choose when I'm feeling strong enough or need the information right now. So many of the 'humdrum', the 'ordinary' parenting situations are actually blasted in a way that you can't avoid. You can't choose when you are ready to receive the information. When I'm dealing with a really bad ADHD temper tantrum I do not want to open the paper and read some research saying it's diagnosed too freely and it's really bad parenting. That makes me react emotionally. You can't wonder at it really.
But the magic key, as I see it, is what you do with this emotion and how you harness it.
Bad news throws you into a hole. If you stay impossibly chipper all the time you probably aren't actually seeing the situation for what it is, taking it seriously.
You could get mad with the person bringing you the bad news - slinging insults, discrediting them in all sorts of ridiculous ways, sticking your fingers in your ears and lah lah lahing.
You can sit and cry for a while, contemplating the situation, feeling the complex and swirling emotions.
But eventually you have to do something, you have to progress the journey onwards - for your child's sake if not your own.
I personally use that time, after hitting the bottom and acknowledging it, to look at the situation and trying to map out a plan to fix or re-mediate the situation as best you can.
But again, so often, your response is part of your own unique parenting journey - is this the biggest mountain you have to climb? Is this your first stumbling point? Did you even expect a stumbling point in your journey?
In so many ways you also need this emotional fuel to keep moving, it stays with you, as part of your journey.
You don't, you can't let go, move on. It is part of what has shaped and fired your parenting - and all the emotions, in whatever form they come in, are all part of that spiral.
Thursday, May 5, 2011
Now we are 6...
And just as AA Milne saw the wonder and magic in turning 6 so have we with T over these past 6 years and especially over the past 20 days since his latest surgery.
Yes, Mr Monster has turned 6 and we had a great party on the weekend to celebrate but what made it the biggest celebration of all was watching him tuck into chippies and other foods that he simply has not physically been able to eat for around 9 months and we truly wondered if he ever would be able to eat solid food without pain ever again.
Yesterday I made him his first batch of T friendly bread again in a long time. He ate half a slice with peanut butter for breakfast, ate 3/4 of a slice for lunch that day and a whole slice for breakfast this morning!
He is, once again talking about his 'Bye Bye Pump' party - and trust me, if his recent birthday was a good bash that one's going to be totally off the records!
We saw the paed yesterday for him and, well there wasn't much to say really. I do hate the way different scales weigh differently - GP on Monday said 16kg and 108.3cm, but the hosp scales and measurements said 106cm and 17.4 kg. Funny how the kid can shrink and gain so much over the space of 2 days...
She did comment that she has never come across the complications T has had with his tube - trust him to come up with something rare. The surgeon described it as a rare complication too but seen occasionally. Funny how I said right from the start it was something mechanical, and it was me who actually planted the suggestion of moving the tube in the first place.
We still have a long way to go and it's really not being helped by the fact that the tubing pops off his gastrostomy tube if we run his feeds very fast. I did get him back up to 90ml/hr flow rate today but that still means daytime feeds are taking a long time - 2 lots of 250 mls - and so daytime eating is being affected.
So I'm trying to be patient and see this time as exploring textures again - he did comment, while eating pizza the other day, that his mouth got sore. From his description I'd guess it was actually muscle fatigue after not eating anything that chewy for around 8-9 months. So there is ground to be regained.
We do see the surgeon for a follow up on 17 May and I've got everything crossed he'll say T is healed enough to move to a button again. That has an extension tube which locks into place and so we can progress his feeds rapidly back to his previous flow rates and then seriously work on eating.
I have to get his nurse to agree too - and actually see him! This has been a bit of a battle as it would appear the surgeon hasn't done a discharge form - she's in the public system and we had the op done privately. She seems to be rushed off her feet and since she doesn't have the relevant bit of paper she's not doing the work. T hasn't had any wound checks from her and it took two calls to even get to talk to her after discharge, and I've called twice since then but she's not returning my calls at all.
I know I've done all of this post tube placement stuff before but still, I'd feel happier with a bit of liaison and, heaven forbid, reassurance.
I guess it's an ill wind and all that because the GP has seen more than enough of T's belly!
We've had problems in the past with the surgeon's stitches being very neat, tight and tiny (that why they heal so nicely) and a total sod to get out!
It took two attempts after his first surgery to get them all, it took two attempts after N's surgery to get all his and it took nearly two attempts to get all W's - not because he was problematic but because they took so long.
This time it took 3 attempts before the GP bailed on the whole exercise and prescribed a sedative for the next attempt - for T NOT ME!
Tomorrow we have attempt #5 and the second under sedation as I found around 4 - 5 stitches which we didn't get the first 'successful' time.
I have also arranged to get his flu jab done at the same appointment - seems a pity to 'waste' the sedation since he's so anti anything medical at the moment!
I did mention to the paed that he really hasn't learnt a great deal over this year and is still a long way from being able to read etc. She wasn't concerned and said he'd catch up she was sure. I do keep reassuring myself that if he were a Steiner school kid he wouldn't be allowed anywhere near the written word at this age and you can't tell the difference in their achievement by age 9 or so. He has had an awful year in terms of having the energy or ability to learn anything - what with retching or sleeping about a 3rd of his day away most days.
That's a very small snippet of what life's been like for T after many feeds and often twice a day. It was a mild event that day and what you see is only a few moments of what can go on for 30-45 mins.
It is the fact that he is now eating without pain - and having feeds without this kind of endurance event which makes me so incredibly grateful for the surgeon and my persistence, his skills and courage to re-visit a situation and decide to change his mind and try to find an answer. Not many doctors, never mind surgeons, will actually change their minds so completely from a 'I wouldn't know what to operate on' to a 'I'll give this a try, no promises mind you'.
As P has commented in the past 10 days or so - we have our sparkly eyed T back again.
This surgery, although an ordeal, has to have been the best birthday present he could have got and has certainly given me a real Easter sense this year - of a new life for T, new growth and a real new hope.
Yes, Mr Monster has turned 6 and we had a great party on the weekend to celebrate but what made it the biggest celebration of all was watching him tuck into chippies and other foods that he simply has not physically been able to eat for around 9 months and we truly wondered if he ever would be able to eat solid food without pain ever again.
Yesterday I made him his first batch of T friendly bread again in a long time. He ate half a slice with peanut butter for breakfast, ate 3/4 of a slice for lunch that day and a whole slice for breakfast this morning!
He is, once again talking about his 'Bye Bye Pump' party - and trust me, if his recent birthday was a good bash that one's going to be totally off the records!
We saw the paed yesterday for him and, well there wasn't much to say really. I do hate the way different scales weigh differently - GP on Monday said 16kg and 108.3cm, but the hosp scales and measurements said 106cm and 17.4 kg. Funny how the kid can shrink and gain so much over the space of 2 days...
She did comment that she has never come across the complications T has had with his tube - trust him to come up with something rare. The surgeon described it as a rare complication too but seen occasionally. Funny how I said right from the start it was something mechanical, and it was me who actually planted the suggestion of moving the tube in the first place.
We still have a long way to go and it's really not being helped by the fact that the tubing pops off his gastrostomy tube if we run his feeds very fast. I did get him back up to 90ml/hr flow rate today but that still means daytime feeds are taking a long time - 2 lots of 250 mls - and so daytime eating is being affected.
So I'm trying to be patient and see this time as exploring textures again - he did comment, while eating pizza the other day, that his mouth got sore. From his description I'd guess it was actually muscle fatigue after not eating anything that chewy for around 8-9 months. So there is ground to be regained.
We do see the surgeon for a follow up on 17 May and I've got everything crossed he'll say T is healed enough to move to a button again. That has an extension tube which locks into place and so we can progress his feeds rapidly back to his previous flow rates and then seriously work on eating.
I have to get his nurse to agree too - and actually see him! This has been a bit of a battle as it would appear the surgeon hasn't done a discharge form - she's in the public system and we had the op done privately. She seems to be rushed off her feet and since she doesn't have the relevant bit of paper she's not doing the work. T hasn't had any wound checks from her and it took two calls to even get to talk to her after discharge, and I've called twice since then but she's not returning my calls at all.
I know I've done all of this post tube placement stuff before but still, I'd feel happier with a bit of liaison and, heaven forbid, reassurance.
I guess it's an ill wind and all that because the GP has seen more than enough of T's belly!
We've had problems in the past with the surgeon's stitches being very neat, tight and tiny (that why they heal so nicely) and a total sod to get out!
It took two attempts after his first surgery to get them all, it took two attempts after N's surgery to get all his and it took nearly two attempts to get all W's - not because he was problematic but because they took so long.
This time it took 3 attempts before the GP bailed on the whole exercise and prescribed a sedative for the next attempt - for T NOT ME!
Tomorrow we have attempt #5 and the second under sedation as I found around 4 - 5 stitches which we didn't get the first 'successful' time.
I have also arranged to get his flu jab done at the same appointment - seems a pity to 'waste' the sedation since he's so anti anything medical at the moment!
That's a very small snippet of what life's been like for T after many feeds and often twice a day. It was a mild event that day and what you see is only a few moments of what can go on for 30-45 mins.
It is the fact that he is now eating without pain - and having feeds without this kind of endurance event which makes me so incredibly grateful for the surgeon and my persistence, his skills and courage to re-visit a situation and decide to change his mind and try to find an answer. Not many doctors, never mind surgeons, will actually change their minds so completely from a 'I wouldn't know what to operate on' to a 'I'll give this a try, no promises mind you'.
As P has commented in the past 10 days or so - we have our sparkly eyed T back again.
This surgery, although an ordeal, has to have been the best birthday present he could have got and has certainly given me a real Easter sense this year - of a new life for T, new growth and a real new hope.
Monday, April 18, 2011
Adventures in Surgeryland - again...
Oh yes, Life's been back to it's old tricks and yes, despite not having set foot in a private hospital for 2 years (T's last foray into an operating theatre was at the public hospital) I was recognised by both ward nurses and theatre staff!
You know you frequent these places too often when this kind of thing happens.
So T's feeding tube has been moved. That decision was only made about 3 weeks ago so it came up fast and didn't give us too much time to get mentally prepared - or too nervous I guess. But when it's billed as the last thing they can think of to help and after this they are out of ideas then there's a heck of a lot riding on it and that's enough to make you feel like a cat on a hot tin roof, even if it is a pretty minor procedure and described as 'non-invasive' by the surgeon. Um sorry, even if it's laparoscopic it's still my kiddo you are cutting into and that feels invasive to me!
But T was obviously very keen to get rid of the pain and retching he's been living with for the past about 10 months - he woke me on Thursday morning with "Get up Mummy, It's Surgery Day!"
He was very positive, almost enthusiastic with only the odd quiet moment for most of the day. He fell asleep in the car on the way to the hospital although I have my suspicions about that being an escape technique rather than being so relaxed about it all!
And so it was a bit of a challenge for me to keep the positivity up for him - but we did it. He'd obviously been visulising 'the gloopies' packing their bags for a while as he told me a story about them and what they were packing.
He only started to fray around the edges as he and I changed to go into theatre and he got very quiet and all you could hear were these deep, shaky breaths and when you looked, this little jaw set but shaking at times with the odd tear sneaking down his cheek. He was like that as we waited him his room, pulled himself together on the way to theatre but as we waited outside he started again. The theatre nurses were very impressed with his bravery as they could see how close he was to bursting into tears.
It was only as they stated the IV to put him under that he lost the plot.
He started screaming, not fighting much but screaming and screaming. The anaesthetist was assuring us over and over that it couldn't be hurting him as he'd had lots of EMLA cream to numb his hand, that he was in and it was okay and so on. But still T screamed.
As I stood at his head trying to comfort him and stroke his head, our wonderful surgeon was beside T talking to him and stroking his cheek too. I turned to him and commented I was sure T wasn't in pain but that it was just the impact of everything catching up with him.
He was under quickly and I got to do the lonely, anxious walk back to the room to wait.
I HATE this bit.
I HATE driving them into the hospital, it feels like you still have an option not to do this to them but you are voluntarily handing them over to have pain inflicted on them, essentially you are hurting them. But once you get there and you sing in there is a relentless, inevitability about the process and it just happens, there are no choices any more.
I HATE taking them to theatre, watching them go under. That has never got any easier, even though Thursday was the 7th time in 3 1/2 years. I always shed a little tear leaving them, it makes me cry just thinking about it.
I trust our surgeon absolutely - obviously. He always works with top notch anaesthetists (Thursday's was also an intensivist) so I know the kids are 'safe'.
But that walk back to the room which always seems 3 times longer than going to theatre, looking at the space where the bed was and should be, waiting, watching the time, listening for the surgeon in the hallway coming to tell you how it went - that's the nightmare bit.
Two of T's surgeries have been simple scopes - 20 or so minutes a piece tops.
His first one I had a horrible fright when they came running to get me - it turned out he'd woken up as mad as heck and they needed me to calm him down!
His fundoplication, I had a horrible fright when someone came in when I knew it was only part way through the operation saying they'd had a call from theatre. Turned out they needed another nappy!
His last scope went smoothly - I got to Recovery and discovered him eating! I was only concerned they hadn't checked the iceblock to make sure it didn't contain anything he was allergic to!
This time the operation was supposed to be only 45 minutes.
45 minutes came and went.
1 hour came and went.
1 1/2 hours came and went.
By this stage I'd given up pretending to read, cross stitch, lesson plan, anything. I was pacing the room.
I was just about to go and find a nurse when the surgeon came in, nearly 2 hours after the surgery had started.
He normally comes in right away, often still in scrubs, on one occasion still in his surgical gumboots! This time he was dressed in ordinary clothes and I know he had a full list that day but that he'd checked the other patients and T was his last one for the day. So it won't have taken the full 2 hours but definitely took much longer than expected.
He described the operation as hard but that T had remained stable throughout - always good to hear but always makes me wonder if they had anticipated that he wasn't going to be.
Our surgeon has a wonderful way with words. I've noticed that time and time again.
He described T's stomach well and truly tethered - which is what he thought was the issue - but that separating things out as like chiseling through concrete.
At least what he found was consistent with it being the problem. If we had drawn another blank then it would have left us with no answers and so no treatment at all.
He said that he'd managed to free most of it but there was still a little tethered but that he hoped it would be enough to help T. The new tube has been placed much more centrally on his chest and higher in the hopes of giving him a little growing space.
As he left the room he said he hoped and prayed this would be the answer for T.
And so now all I wanted was to get to Recovery to see T. But I had to wait another 30 minutes for that and it was another hour before he and I got back to the room.
They weren't too happy about his oxygen saturation levels in Recovery, and to be honest neither was I. He was sitting on 96% which isn't too bad but they couldn't get him to bump them up. After his surgery W was satting in the high 80's - early 90's and that was ON oxygen so this was better than that. But he'd complain of feeling dizzy and then go back to sleep. So in the end they put an 02 mask by his face and gave him blow by oxygen - that promptly brought him back up to 98 -99% but he'd drop to 96 every time anyone removed it or he moved his head away.
So he spent most of the night with blow by oxygen.
The first night was a 'fun' night as I expected. IV drip chamber needed re-filling every 2 hours, nasogastric tube needed aspirating every hour, his obs needed doing every couple of hours as well - particularly with his sniffing oxygen to get by!
We did manage to get all the cares in line though so we didn't have a check of the iv in between ng aspirations etc. I think I slept through 1 of the ng aspirations so got 2 connected hours at one point. Otherwise it was a wake-up at least very hour and sometimes T needed me in between.
He didn't get his ng tube out until nearly 12 midday on his first post op day and he couldn't start to eat or drink until then. It was pretty clear from the state he was in, the surgeon's comments, the fact that he wasn't shedding tubes until late, and the fact that I wanted to be absolutely sure feeding with the new tube was working well before going home, that he was going to score a second night - despite the fact he was only booked for the one night.
We made slow but steady progress on the first day post op and he was starting to eat minimal amounts by that evening. He was SUPPOSED to be eating mashed potato but threw a tantrum after a couple of mouthfuls wanting brownie. The surgeon had laughed when T had asked him when he could eat and if he could have brownie.
I'd given in and given him a small bit of brownie in exchange for him eating 4-5 mouthfuls of mashed potato.
The next morning he ate an entire weetbix from my breakfast tray - thereby stealing half my cereal!
We'd had some minor issues with nausea but that was resolved by stopping his gastrostomy feeds for a couple of hours and then starting at a slower rate. The absolutely thrilling thing was the total lack of pain with eating!
His first night home he ate 80g of spaghetti bolognaise and commented delightedly "It doesn't hurt Mummy!"
His eating is making slow progress but it is progressing and when you consider that he only started eating post op 9 meals ago that's not bad. We were making nice progress on his increasing tube feeds but seem to have stalled a bit at the moment. It is challenging to get his required 1000 mls/24 hours in at the current rate and I am concerned about weight loss, particularly since we all had a tummy bug a few weeks ago and he lost half a kilo then. But, having gone through the surgery, T has had to deal with the pain and the poking and prodding - only occasionally rebelling and screaming when someone wants to check his sites - we owe it to him not to push and put him through any more fear and pain.
He wants to eat and he has kept on trying, courageously, through it all and so I can't see him giving up now!
This is apparently an unusual complication of rapid growth with a gastrostomy tube. It's just typical that T would get hit with something unusual.
I'm working on the basis, at the moment, that if it happened once, it could happen again and so the clock is ticking to get him as far off the tube feeds as we possibly can. However, pushing too fast too soon can lead to other, major issues and I'm not going back to that.
I'm hoping that the phenomenal growth we saw after the first tube was the wonderful, mythical 'catch-up growth' I've heard so much about but never seen before. If that's so then he shouldn't shoot up so rapidly this time and so the issues may not pop up again or so fast.
But we're back to square one in terms of getting enough nutrition into him - right back to where we were in Feb 2009. The only thing that makes it not completely square one is that, back then, T didn't trust eating and didn't want to eat. It took 6 months out of the about 14 before the dreaded 'gloopies' started before he even wanted to eat. We're not at that point this time. He likes to eat, wants to eat and had been trying to eat despite the pain even as late as the day before his surgery. So we're ahead on that front.
My other big fear for T is to do with after he's finished with the gastrostomy tube.
If things were tethered once before and still partially tethered and he needs to tube for a good while longer - what's going to stop it getting more tethered, just enough to cause passing symptoms which could get worse in the future even if the tube is removed? How will we know that the stomach has returned to it's proper place with no adhesions once the tube is gone? Could T be looking at a 5th surgery, just to be sure it's all returned to normal afterwards?
I think our surgeon is wonderful and I wouldn't want one of my children operated on by anyone else now but I'd love to see him socially not surgically!
You know you frequent these places too often when this kind of thing happens.
So T's feeding tube has been moved. That decision was only made about 3 weeks ago so it came up fast and didn't give us too much time to get mentally prepared - or too nervous I guess. But when it's billed as the last thing they can think of to help and after this they are out of ideas then there's a heck of a lot riding on it and that's enough to make you feel like a cat on a hot tin roof, even if it is a pretty minor procedure and described as 'non-invasive' by the surgeon. Um sorry, even if it's laparoscopic it's still my kiddo you are cutting into and that feels invasive to me!
But T was obviously very keen to get rid of the pain and retching he's been living with for the past about 10 months - he woke me on Thursday morning with "Get up Mummy, It's Surgery Day!"
He was very positive, almost enthusiastic with only the odd quiet moment for most of the day. He fell asleep in the car on the way to the hospital although I have my suspicions about that being an escape technique rather than being so relaxed about it all!
And so it was a bit of a challenge for me to keep the positivity up for him - but we did it. He'd obviously been visulising 'the gloopies' packing their bags for a while as he told me a story about them and what they were packing.
He only started to fray around the edges as he and I changed to go into theatre and he got very quiet and all you could hear were these deep, shaky breaths and when you looked, this little jaw set but shaking at times with the odd tear sneaking down his cheek. He was like that as we waited him his room, pulled himself together on the way to theatre but as we waited outside he started again. The theatre nurses were very impressed with his bravery as they could see how close he was to bursting into tears.
It was only as they stated the IV to put him under that he lost the plot.
He started screaming, not fighting much but screaming and screaming. The anaesthetist was assuring us over and over that it couldn't be hurting him as he'd had lots of EMLA cream to numb his hand, that he was in and it was okay and so on. But still T screamed.
As I stood at his head trying to comfort him and stroke his head, our wonderful surgeon was beside T talking to him and stroking his cheek too. I turned to him and commented I was sure T wasn't in pain but that it was just the impact of everything catching up with him.
He was under quickly and I got to do the lonely, anxious walk back to the room to wait.
I HATE this bit.
I HATE driving them into the hospital, it feels like you still have an option not to do this to them but you are voluntarily handing them over to have pain inflicted on them, essentially you are hurting them. But once you get there and you sing in there is a relentless, inevitability about the process and it just happens, there are no choices any more.
I HATE taking them to theatre, watching them go under. That has never got any easier, even though Thursday was the 7th time in 3 1/2 years. I always shed a little tear leaving them, it makes me cry just thinking about it.
I trust our surgeon absolutely - obviously. He always works with top notch anaesthetists (Thursday's was also an intensivist) so I know the kids are 'safe'.
But that walk back to the room which always seems 3 times longer than going to theatre, looking at the space where the bed was and should be, waiting, watching the time, listening for the surgeon in the hallway coming to tell you how it went - that's the nightmare bit.
Two of T's surgeries have been simple scopes - 20 or so minutes a piece tops.
His first one I had a horrible fright when they came running to get me - it turned out he'd woken up as mad as heck and they needed me to calm him down!
His fundoplication, I had a horrible fright when someone came in when I knew it was only part way through the operation saying they'd had a call from theatre. Turned out they needed another nappy!
His last scope went smoothly - I got to Recovery and discovered him eating! I was only concerned they hadn't checked the iceblock to make sure it didn't contain anything he was allergic to!
This time the operation was supposed to be only 45 minutes.
45 minutes came and went.
1 hour came and went.
1 1/2 hours came and went.
By this stage I'd given up pretending to read, cross stitch, lesson plan, anything. I was pacing the room.
I was just about to go and find a nurse when the surgeon came in, nearly 2 hours after the surgery had started.
He normally comes in right away, often still in scrubs, on one occasion still in his surgical gumboots! This time he was dressed in ordinary clothes and I know he had a full list that day but that he'd checked the other patients and T was his last one for the day. So it won't have taken the full 2 hours but definitely took much longer than expected.
He described the operation as hard but that T had remained stable throughout - always good to hear but always makes me wonder if they had anticipated that he wasn't going to be.
Our surgeon has a wonderful way with words. I've noticed that time and time again.
He described T's stomach well and truly tethered - which is what he thought was the issue - but that separating things out as like chiseling through concrete.
At least what he found was consistent with it being the problem. If we had drawn another blank then it would have left us with no answers and so no treatment at all.
He said that he'd managed to free most of it but there was still a little tethered but that he hoped it would be enough to help T. The new tube has been placed much more centrally on his chest and higher in the hopes of giving him a little growing space.
As he left the room he said he hoped and prayed this would be the answer for T.
And so now all I wanted was to get to Recovery to see T. But I had to wait another 30 minutes for that and it was another hour before he and I got back to the room.
They weren't too happy about his oxygen saturation levels in Recovery, and to be honest neither was I. He was sitting on 96% which isn't too bad but they couldn't get him to bump them up. After his surgery W was satting in the high 80's - early 90's and that was ON oxygen so this was better than that. But he'd complain of feeling dizzy and then go back to sleep. So in the end they put an 02 mask by his face and gave him blow by oxygen - that promptly brought him back up to 98 -99% but he'd drop to 96 every time anyone removed it or he moved his head away.
So he spent most of the night with blow by oxygen.
The first night was a 'fun' night as I expected. IV drip chamber needed re-filling every 2 hours, nasogastric tube needed aspirating every hour, his obs needed doing every couple of hours as well - particularly with his sniffing oxygen to get by!
We did manage to get all the cares in line though so we didn't have a check of the iv in between ng aspirations etc. I think I slept through 1 of the ng aspirations so got 2 connected hours at one point. Otherwise it was a wake-up at least very hour and sometimes T needed me in between.
He didn't get his ng tube out until nearly 12 midday on his first post op day and he couldn't start to eat or drink until then. It was pretty clear from the state he was in, the surgeon's comments, the fact that he wasn't shedding tubes until late, and the fact that I wanted to be absolutely sure feeding with the new tube was working well before going home, that he was going to score a second night - despite the fact he was only booked for the one night.
We made slow but steady progress on the first day post op and he was starting to eat minimal amounts by that evening. He was SUPPOSED to be eating mashed potato but threw a tantrum after a couple of mouthfuls wanting brownie. The surgeon had laughed when T had asked him when he could eat and if he could have brownie.
I'd given in and given him a small bit of brownie in exchange for him eating 4-5 mouthfuls of mashed potato.
The next morning he ate an entire weetbix from my breakfast tray - thereby stealing half my cereal!
We'd had some minor issues with nausea but that was resolved by stopping his gastrostomy feeds for a couple of hours and then starting at a slower rate. The absolutely thrilling thing was the total lack of pain with eating!
His first night home he ate 80g of spaghetti bolognaise and commented delightedly "It doesn't hurt Mummy!"
His eating is making slow progress but it is progressing and when you consider that he only started eating post op 9 meals ago that's not bad. We were making nice progress on his increasing tube feeds but seem to have stalled a bit at the moment. It is challenging to get his required 1000 mls/24 hours in at the current rate and I am concerned about weight loss, particularly since we all had a tummy bug a few weeks ago and he lost half a kilo then. But, having gone through the surgery, T has had to deal with the pain and the poking and prodding - only occasionally rebelling and screaming when someone wants to check his sites - we owe it to him not to push and put him through any more fear and pain.
He wants to eat and he has kept on trying, courageously, through it all and so I can't see him giving up now!
This is apparently an unusual complication of rapid growth with a gastrostomy tube. It's just typical that T would get hit with something unusual.
I'm working on the basis, at the moment, that if it happened once, it could happen again and so the clock is ticking to get him as far off the tube feeds as we possibly can. However, pushing too fast too soon can lead to other, major issues and I'm not going back to that.
I'm hoping that the phenomenal growth we saw after the first tube was the wonderful, mythical 'catch-up growth' I've heard so much about but never seen before. If that's so then he shouldn't shoot up so rapidly this time and so the issues may not pop up again or so fast.
But we're back to square one in terms of getting enough nutrition into him - right back to where we were in Feb 2009. The only thing that makes it not completely square one is that, back then, T didn't trust eating and didn't want to eat. It took 6 months out of the about 14 before the dreaded 'gloopies' started before he even wanted to eat. We're not at that point this time. He likes to eat, wants to eat and had been trying to eat despite the pain even as late as the day before his surgery. So we're ahead on that front.
My other big fear for T is to do with after he's finished with the gastrostomy tube.
If things were tethered once before and still partially tethered and he needs to tube for a good while longer - what's going to stop it getting more tethered, just enough to cause passing symptoms which could get worse in the future even if the tube is removed? How will we know that the stomach has returned to it's proper place with no adhesions once the tube is gone? Could T be looking at a 5th surgery, just to be sure it's all returned to normal afterwards?
I think our surgeon is wonderful and I wouldn't want one of my children operated on by anyone else now but I'd love to see him socially not surgically!
Saturday, March 26, 2011
You gotta have hope
Apologies to lyricist Benny Van Buren!
But I keep coming back to this thought.
A few months ago I said to a nurse, in the context of something else, if you don't have hope what else do you have?
You have to keep trying, hoping, praying - especially as sometimes when your back is pretty much against the wall there really isn't anything else!
So this is where we find ourselves, again, with T.
He isn't gaining weight, his eating is going from bad to worse, his retching spells can be extremely violent even to the extent that he can't swallow his saliva in between and winds up choking on it, and his on-going pain levels make him miserable.
After a particularly nasty bout of retching he came to me and said that he wishes he'd never been born because then he would never have got the gloopies.
In terms of quality of life we've hit close to the bottom for him right now.
The gastros have no real idea - we've tried medication with no response, possibly made things worse - and when a doctor says that 'hopefully he grow out of the problem but it'll take years not months' it doesn't make you very happy as a parent.
And so T is booked for his 4th surgery in 3 years, the 3rd in 2 years.
The surgeon said we have a good odds on chance that this will work but he's not offering any promises. They will be re-siting his gastrostomy button in this surgery. He will do it laproscopically and so he can have a good look around at the same time. He will close the old hole at stomach level and make a new one appropriate to his growth. We're all hoping that he may be able to use the same hole at skin level to bring the new gastrostomy out but that really depends on what he finds and considering the on-going granulation issues he's inclined to make a new exit point too.
He will try to go straight to a button rather than the long dangly tube which causes so many issues last time - but again the surgeon says things heal better with the long tube and, as always, we will do whatever has the best long term outcomes for T. The long tube is only as the tract heals so about 4-6 weeks.
It means an overnight stay in hospital due to needing an ng tube for drainage post op - and I'm hoping it will only be the one night but knowing T anything could happen. From the little I know about this surgery (last time was his fundo AND gastrostomy) it should only be about 30-45 mins on the table - but again he wants to check things out and this is T. He loves to throw curve balls at people!
Also I want to be sure the tube is working well before we go home because I don't need an urgent re-admission on my hands and with T's eating/lack of drinking he really really needs this tube.
And so I find myself hoping, madly, desperately, that this surgery is a good idea, that it will solve all the gastro issues and that it is the right thing to put him through.
I know that the surgeon simply wouldn't cut if he didn't think it was the best option for T. The gastros have suggested it as a possible answer and certainly a 'rule-out' option. There isn't anything else to try and we have to try everything before we resign ourselves to T leading a life of tube feedings and on-going miserable pain.
But there are always risks - not just those normally associated with surgery but to do with the over all condition T is in. The surgeon commented that at least T has good nutrition. Then he has an appointment with the dietician who expresses her concern over his nutrition as he's really only been getting a formula diet and says she wants extensive blood testing to get his baselines. Then that reminds me that last year the GP commented that T's iron levels were low but he'd be okay so long as he didn't bleed. T's eating has only got worse since then and is inevitably going to bleed with the surgery. So off we go to the GP to discuss that issue.
My file notes had said that his circulating levels were okay, just the stores were low. I was able to give the GP the date of the last bloods and so she got his results up and it turns out the results I thought were normal were only just normal.
So he's now on iron supplementation as a pre-op precaution and we also did bloods to check exact current levels.
All of this leaves T in a more vulnerable situation for going into the surgery.
But you've got to hope!
Hope he comes through the surgery fine, hope that the surgery fixes the whole issue and hope that his eating recovers quickly.
In terms of eating he's right back to square one where he was in Feb 09 when he had his initial surgery. He's getting 1000ml/day of formula all through the tube and his eating is minimal at best and over this past month he has even been refusing his brownies due to pain. He has been through so many periods in his life with under nutrition you have to wonder about any long term effects.
And still you simply have to hope - T doesn't give in, and neither can we.
In Benny Van Buren's song - You gotta have heart, from the Broadway Show "Damn Yankees" the baseball team is totally down on it's luck, can't win for losing and yet they look forward to one day when things improve.
And so we do likewise.
But I keep coming back to this thought.
A few months ago I said to a nurse, in the context of something else, if you don't have hope what else do you have?
You have to keep trying, hoping, praying - especially as sometimes when your back is pretty much against the wall there really isn't anything else!
So this is where we find ourselves, again, with T.
He isn't gaining weight, his eating is going from bad to worse, his retching spells can be extremely violent even to the extent that he can't swallow his saliva in between and winds up choking on it, and his on-going pain levels make him miserable.
After a particularly nasty bout of retching he came to me and said that he wishes he'd never been born because then he would never have got the gloopies.
In terms of quality of life we've hit close to the bottom for him right now.
The gastros have no real idea - we've tried medication with no response, possibly made things worse - and when a doctor says that 'hopefully he grow out of the problem but it'll take years not months' it doesn't make you very happy as a parent.
And so T is booked for his 4th surgery in 3 years, the 3rd in 2 years.
The surgeon said we have a good odds on chance that this will work but he's not offering any promises. They will be re-siting his gastrostomy button in this surgery. He will do it laproscopically and so he can have a good look around at the same time. He will close the old hole at stomach level and make a new one appropriate to his growth. We're all hoping that he may be able to use the same hole at skin level to bring the new gastrostomy out but that really depends on what he finds and considering the on-going granulation issues he's inclined to make a new exit point too.
He will try to go straight to a button rather than the long dangly tube which causes so many issues last time - but again the surgeon says things heal better with the long tube and, as always, we will do whatever has the best long term outcomes for T. The long tube is only as the tract heals so about 4-6 weeks.
It means an overnight stay in hospital due to needing an ng tube for drainage post op - and I'm hoping it will only be the one night but knowing T anything could happen. From the little I know about this surgery (last time was his fundo AND gastrostomy) it should only be about 30-45 mins on the table - but again he wants to check things out and this is T. He loves to throw curve balls at people!
Also I want to be sure the tube is working well before we go home because I don't need an urgent re-admission on my hands and with T's eating/lack of drinking he really really needs this tube.
And so I find myself hoping, madly, desperately, that this surgery is a good idea, that it will solve all the gastro issues and that it is the right thing to put him through.
I know that the surgeon simply wouldn't cut if he didn't think it was the best option for T. The gastros have suggested it as a possible answer and certainly a 'rule-out' option. There isn't anything else to try and we have to try everything before we resign ourselves to T leading a life of tube feedings and on-going miserable pain.
But there are always risks - not just those normally associated with surgery but to do with the over all condition T is in. The surgeon commented that at least T has good nutrition. Then he has an appointment with the dietician who expresses her concern over his nutrition as he's really only been getting a formula diet and says she wants extensive blood testing to get his baselines. Then that reminds me that last year the GP commented that T's iron levels were low but he'd be okay so long as he didn't bleed. T's eating has only got worse since then and is inevitably going to bleed with the surgery. So off we go to the GP to discuss that issue.
My file notes had said that his circulating levels were okay, just the stores were low. I was able to give the GP the date of the last bloods and so she got his results up and it turns out the results I thought were normal were only just normal.
So he's now on iron supplementation as a pre-op precaution and we also did bloods to check exact current levels.
All of this leaves T in a more vulnerable situation for going into the surgery.
But you've got to hope!
Hope he comes through the surgery fine, hope that the surgery fixes the whole issue and hope that his eating recovers quickly.
In terms of eating he's right back to square one where he was in Feb 09 when he had his initial surgery. He's getting 1000ml/day of formula all through the tube and his eating is minimal at best and over this past month he has even been refusing his brownies due to pain. He has been through so many periods in his life with under nutrition you have to wonder about any long term effects.
And still you simply have to hope - T doesn't give in, and neither can we.
In Benny Van Buren's song - You gotta have heart, from the Broadway Show "Damn Yankees" the baseball team is totally down on it's luck, can't win for losing and yet they look forward to one day when things improve.
And so we do likewise.
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