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.
Our on-going saga with life with 3 prematurely born boys. The fun doesn't end at the NICU door, even for 'late' preemies.
Friday, May 27, 2011
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.
Wednesday, March 2, 2011
Life's Earthquakes can really shake you.
It's been a while since I posted and so much but yet so little has happened.
The title of this blog post is both literal and metaphorical.
In so many ways I feel I have nothing to worry about or complain about compared to the population of Christchurch, New Zealand.
A week ago yesterday their world was literally rocked on it's foundation by a 6.3 devastating earthquake. This is on top of their 7.1 in Sept last year. Last time no one was killed, this time it's currently 159 and climbing.
Some times life sends warnings, sometimes it takes no prisoners.
So many still without water, many still without power.
I think about how we'd cope in the same circumstances and can see why they have evacuated disabled children.
Despite our fairly well equipped emergency kit we would have to head to a welfare centre and take our chances or leave town. T needs his day feeds, I need to be able to clean feed containers in clean water and also to mix formula in safe water for him. Never mind the need for power for the pump for 3 feeds a day. The battery only lasts for about 24 hours of feeds.
And as if we needed yet another reminder of life's impermanence our town was shaken by a quake last night. Not a bad one, the kind we often get and it was more noise than movement. But I panicked. I don't normally. I'm good in an emergency as a general thing - just two weeks ago our fire alarms went off for no apparent reason in the middle of the night. P went off to see what had caused it as there was no smoke smell and I executed a text book evacuation of the younger two, incl unhooking T from his pump in record time and getting them out.
But because of the death and destruction in Christchurch and the expectation that our town will be hit by a severe quake sometime soonish it was way scarier than it should have been.
Useful lesson learnt though was we need a torch that works in the kitchen and that some child has purloined one of the torches in a bedside drawers - I thought they didn't know we had them there to prevent exactly that happening.
Those are the literal earthquakes.
But there are other life altering earthquakes which can turn your life upside down.
There are emotional earthquakes as well.
The end of last month was my little micro-prem nieces' due date.
My heart breaks when I think of them and their so short lives.
My heart breaks for their parents' empty arms and broken hearts.
As usual the distance between delivery date and due date is a stark stick in the sand showing clearly the gap of lost gestation and lost opportunity.
Granted the twins' gap is so much larger than any of my children, but the lost gestation, lost opportunity and lost potential are in someways clearer because all of my children live with the impact of prematurity through their everyday lives.
It's the age old thing - is the loss worse because they are absolutely gone, or is it worse to have to continue on with the impacts everyday.
The battle was fought courageously, intensely and then lost for the twins.
But as I write, I was supposed to be doing an annual Needs Assessment for W, I need to chase N with more Fortisip as he was looking green due to lack of eating, and T is currently hooked up to his pump and has been in and out of tears all day due to higher pain levels today.
For them the battle continues to rage, maybe not as intensively, but more enduringly.
I have just seen a paper written with a strong research base which shows some of the longitudinal impacts for kids born prematurely. It looks at the full cohort of prematurity - naturally with a focus on the extreme premature child as those impacts are so much more severe, but also at the 32-36 weeker inclusive grouping.
It makes hard reading, but validating. My kids might be 'late prems' but none the less people are now studying the impacts of that lost gestation too. The battles they have faced and continue to do so are not because I'm 'looking for trouble', not a good parent or any other justification but fallout from their early arrival and less than optimal conditions inside me.
Other earthquakes in our lives recently have been the two crucial appointments for the younger two children.
N has seen his paed and the eating disorders doc. I know and I'd be an idiot not to know, that N has a real problem eating. I've always called it a feeding disorder - one of the dirty dark secrets of the prem world, that when they strike they can be really hard to get rid of and that late prems (if they develop one) can be just as badly affected as micro prems.
But N's paed called it an eating disorder. As she said, it's not anorexia or what we think of when we talk about eating disorders but still an eating disorder. Apparently N has his own little diagnostic box - as he doesn't fit in any category.
After a hellish week trying to force N into eating we abandoned the efforts due to the exponentially increasing stress levels on everyone in the family but N in particular. When the kid is crying in his sleep and calling out that he can't eat something - all while tucked up in his bed, when the kid is so stressed he is biting himself, throwing tantrums left right and centre, and so stressed he's getting almost sick with it then it's time to blow the whistle.
This is not the way I want to parent, all professional evidence points to the fact that force feeding is not the answer to this kind of feeding problem anyway and can actually increase the problems.
N's paed believes he will just get it together with peer pressure, esp in his teens.
She has said that he cannot go to school on Fortisip alone and we want him to go to school for Intermediate (next year) so she has said he has to be eating lunch by then.
As her recommendation is NOT to admit him to hospital for this intensive program (apparently targeted at anorexic teens) we now have her permission to feed him 5 Fortisips a day and up to 6 if he's not eating his usual amount. The 6 will give him his total calorie needs and so hopefully avoid the behaviour problems we have seen when he doesn't eat. The the past week and a half I think he's only had 5 Fortisips once. Many days he's only had Fortisip at all.
We do go back to see the eating disorders doc in 6 months so we'll see what she says then.
And so the tunnel has lengthened once again. But at least we now have a way to control the behaviour which was causing so much distress to the whole family. There's still no real help or hope in getting him to eat other than wait and hope he develops hunger - hard to do on a litre of thick shake equivalent everyday.
And our lives, hopes and plans have been thrown into disarray for T too.
We saw the gastro for him the other week as well.
Essentially they have no idea what's going on. They acknowledge that something is definitely wrong which is reassuring in it's way and that they have seen a few other children like T in the past.
But there is no magic wand, no answers and only guess work.
The current theories are delayed gastric emptying - or dumping syndrome (rapid gastric emptying!). Yes, they are complete opposites!
We are trialing another gastric motility drug at the moment, and like the last one seems to make him worse. He is regularly in pain, retching, sometimes very violently with his feeds, tired, sore and grumpy. And then 30-45 mins after a feed or eating something he's fine again! But often the background pain levels remain.
If this med doesn't help after two weeks we double the dose and then after that try the two meds together.
I'm not looking forward to that at all.
They have no ideas about pain management or a way forward.
They think it's just a matter of time and he'll 'grow out of it'. That grow out of it is physically - longer gut length etc.
Growing is hard when you can't eat properly - and their time frame is years not months.
So I'm going to book T into the surgeon as he's been running most of this and see what he can suggest for pain management. I see the dietitian at the end of this month and I'll see what she suggests in terms of adaptions to his feed regime. If he's got delayed clearance then rapid feeds during the day probably aren't a good idea - if it's all sitting there no wonder he feels sick. If he's dumping it all from his tummy into his gut then again that plays havoc with the blood sugars and other things and could explain the retching, feeling sick, dizziness, needing to lie down after a feed etc. And if it's rushing out of his tummy a fast feed also isn't a good idea!
So apart from looking at years of tube feeds to come, I'm looking at the distinct possibility of him being hooked up to his feeding pump for much more of everyday.
This will turn many options for everyday life upside down and make us more homebound than previously - and no clear hope for a break from it.
We will now have to look at schooling options for T - Health School which can be the referral point into Correspondence School is probably the best option as his pain levels and variability make it impossible to get him into an ordinary school and at an ordinary time.
And so this month has been full of earthquakes - literal, emotional and in terms of changing the fabric of our everyday lives. Various hopes have been snatched away, tunnels lengthened, more adaptions need to be found.
We will get there.
The human spirit is resilient.
These personal disasters are not as large as the devastation and loss of life in Christchurch.
But they are ours and huge to us.
The title of this blog post is both literal and metaphorical.
In so many ways I feel I have nothing to worry about or complain about compared to the population of Christchurch, New Zealand.
A week ago yesterday their world was literally rocked on it's foundation by a 6.3 devastating earthquake. This is on top of their 7.1 in Sept last year. Last time no one was killed, this time it's currently 159 and climbing.
Some times life sends warnings, sometimes it takes no prisoners.
So many still without water, many still without power.
I think about how we'd cope in the same circumstances and can see why they have evacuated disabled children.
Despite our fairly well equipped emergency kit we would have to head to a welfare centre and take our chances or leave town. T needs his day feeds, I need to be able to clean feed containers in clean water and also to mix formula in safe water for him. Never mind the need for power for the pump for 3 feeds a day. The battery only lasts for about 24 hours of feeds.
And as if we needed yet another reminder of life's impermanence our town was shaken by a quake last night. Not a bad one, the kind we often get and it was more noise than movement. But I panicked. I don't normally. I'm good in an emergency as a general thing - just two weeks ago our fire alarms went off for no apparent reason in the middle of the night. P went off to see what had caused it as there was no smoke smell and I executed a text book evacuation of the younger two, incl unhooking T from his pump in record time and getting them out.
But because of the death and destruction in Christchurch and the expectation that our town will be hit by a severe quake sometime soonish it was way scarier than it should have been.
Useful lesson learnt though was we need a torch that works in the kitchen and that some child has purloined one of the torches in a bedside drawers - I thought they didn't know we had them there to prevent exactly that happening.
Those are the literal earthquakes.
But there are other life altering earthquakes which can turn your life upside down.
There are emotional earthquakes as well.
The end of last month was my little micro-prem nieces' due date.
My heart breaks when I think of them and their so short lives.
My heart breaks for their parents' empty arms and broken hearts.
As usual the distance between delivery date and due date is a stark stick in the sand showing clearly the gap of lost gestation and lost opportunity.
Granted the twins' gap is so much larger than any of my children, but the lost gestation, lost opportunity and lost potential are in someways clearer because all of my children live with the impact of prematurity through their everyday lives.
It's the age old thing - is the loss worse because they are absolutely gone, or is it worse to have to continue on with the impacts everyday.
The battle was fought courageously, intensely and then lost for the twins.
But as I write, I was supposed to be doing an annual Needs Assessment for W, I need to chase N with more Fortisip as he was looking green due to lack of eating, and T is currently hooked up to his pump and has been in and out of tears all day due to higher pain levels today.
For them the battle continues to rage, maybe not as intensively, but more enduringly.
I have just seen a paper written with a strong research base which shows some of the longitudinal impacts for kids born prematurely. It looks at the full cohort of prematurity - naturally with a focus on the extreme premature child as those impacts are so much more severe, but also at the 32-36 weeker inclusive grouping.
It makes hard reading, but validating. My kids might be 'late prems' but none the less people are now studying the impacts of that lost gestation too. The battles they have faced and continue to do so are not because I'm 'looking for trouble', not a good parent or any other justification but fallout from their early arrival and less than optimal conditions inside me.
Other earthquakes in our lives recently have been the two crucial appointments for the younger two children.
N has seen his paed and the eating disorders doc. I know and I'd be an idiot not to know, that N has a real problem eating. I've always called it a feeding disorder - one of the dirty dark secrets of the prem world, that when they strike they can be really hard to get rid of and that late prems (if they develop one) can be just as badly affected as micro prems.
But N's paed called it an eating disorder. As she said, it's not anorexia or what we think of when we talk about eating disorders but still an eating disorder. Apparently N has his own little diagnostic box - as he doesn't fit in any category.
After a hellish week trying to force N into eating we abandoned the efforts due to the exponentially increasing stress levels on everyone in the family but N in particular. When the kid is crying in his sleep and calling out that he can't eat something - all while tucked up in his bed, when the kid is so stressed he is biting himself, throwing tantrums left right and centre, and so stressed he's getting almost sick with it then it's time to blow the whistle.
This is not the way I want to parent, all professional evidence points to the fact that force feeding is not the answer to this kind of feeding problem anyway and can actually increase the problems.
N's paed believes he will just get it together with peer pressure, esp in his teens.
She has said that he cannot go to school on Fortisip alone and we want him to go to school for Intermediate (next year) so she has said he has to be eating lunch by then.
As her recommendation is NOT to admit him to hospital for this intensive program (apparently targeted at anorexic teens) we now have her permission to feed him 5 Fortisips a day and up to 6 if he's not eating his usual amount. The 6 will give him his total calorie needs and so hopefully avoid the behaviour problems we have seen when he doesn't eat. The the past week and a half I think he's only had 5 Fortisips once. Many days he's only had Fortisip at all.
We do go back to see the eating disorders doc in 6 months so we'll see what she says then.
And so the tunnel has lengthened once again. But at least we now have a way to control the behaviour which was causing so much distress to the whole family. There's still no real help or hope in getting him to eat other than wait and hope he develops hunger - hard to do on a litre of thick shake equivalent everyday.
And our lives, hopes and plans have been thrown into disarray for T too.
We saw the gastro for him the other week as well.
Essentially they have no idea what's going on. They acknowledge that something is definitely wrong which is reassuring in it's way and that they have seen a few other children like T in the past.
But there is no magic wand, no answers and only guess work.
The current theories are delayed gastric emptying - or dumping syndrome (rapid gastric emptying!). Yes, they are complete opposites!
We are trialing another gastric motility drug at the moment, and like the last one seems to make him worse. He is regularly in pain, retching, sometimes very violently with his feeds, tired, sore and grumpy. And then 30-45 mins after a feed or eating something he's fine again! But often the background pain levels remain.
If this med doesn't help after two weeks we double the dose and then after that try the two meds together.
I'm not looking forward to that at all.
They have no ideas about pain management or a way forward.
They think it's just a matter of time and he'll 'grow out of it'. That grow out of it is physically - longer gut length etc.
Growing is hard when you can't eat properly - and their time frame is years not months.
So I'm going to book T into the surgeon as he's been running most of this and see what he can suggest for pain management. I see the dietitian at the end of this month and I'll see what she suggests in terms of adaptions to his feed regime. If he's got delayed clearance then rapid feeds during the day probably aren't a good idea - if it's all sitting there no wonder he feels sick. If he's dumping it all from his tummy into his gut then again that plays havoc with the blood sugars and other things and could explain the retching, feeling sick, dizziness, needing to lie down after a feed etc. And if it's rushing out of his tummy a fast feed also isn't a good idea!
So apart from looking at years of tube feeds to come, I'm looking at the distinct possibility of him being hooked up to his feeding pump for much more of everyday.
This will turn many options for everyday life upside down and make us more homebound than previously - and no clear hope for a break from it.
We will now have to look at schooling options for T - Health School which can be the referral point into Correspondence School is probably the best option as his pain levels and variability make it impossible to get him into an ordinary school and at an ordinary time.
And so this month has been full of earthquakes - literal, emotional and in terms of changing the fabric of our everyday lives. Various hopes have been snatched away, tunnels lengthened, more adaptions need to be found.
We will get there.
The human spirit is resilient.
These personal disasters are not as large as the devastation and loss of life in Christchurch.
But they are ours and huge to us.
Thursday, February 10, 2011
Life on a see-saw
Well, I ended last year intending to up date this regularly but life on the see saw continues.
One thing I hoped for was fewer appointments for the kids - epic fail on that one! Between 10 Jan and the end of Feb we will have had 10 medical appointments and possibly more. That's 10 in 7 weeks.
We really spent January recovering and re-grouping after the maelstrom of events and emotions of December and I, for one, still find it incredible to think we're only 9 weeks out from the twins birth.
It has certainly added poignancy to N's birthday this year.
I commented to someone recently that you think of a month being nothing too much but the kids' birthdays and the gaps between that and their due dates always brings home to me exactly how big a stretch of time that really is.
N's birthday cake is nothing but photos, the cards are still sitting on the shelf but when they blow over I don't put them back up straight away any more, his birthday was 22 Jan - and he's still 7 days away from his due date.
A number of people we know have recently had babies and we're thrilled for them! It's a special and amazing miracle. One that so many take for granted.
I wish for them all that the 'normality' so many go into pregnancy and parenting, the blissful state continues unabated and undented.
I know I went into W's pregnancy like that and it is one of those things I think mothers especially, mourn after a premature birth - even if the baby comes out relatively unscathed, especially if you go on to have more children.
You know crap can happen and you no longer think it only happens to certain kinds of people. That blissful state no longer exists and you will never get it back.
So that's one kind of see-saw life has thrown at us lately.
Another is all N.
As those who have read this blog for a while know N has major eating issues. While I knew it was serious it still hurt when I saw, in print, in a paed's letter, the words food aversion.
We had got to the point, just before Christmas where the kids' surgeon had very very reluctantly agreed to put a g-tube in Nicholas so we could try to tackle the eat problems and get him off his Fortisip habit - now a 5 bottle a day habit.
The proposed date for surgery was today.
Obviously it's passed without surgery.
That light at the end of the tunnel has been snatched away - yet again.
What happened was the surgeon succeeded where the psych had failed and got a doctor who has extra experience in eating disorders to agree to see him.
He told me he'd managed that near miracle between Christmas and New Year.
And a week ago today he saw this doc for the first time.
I'm not going to go into huge detail here as we're still comprehending where we are at and are on a fact-finding mission at the moment, just as she is.
The next appointment in 2 weeks time when we fire all our detailed questions to her will be as interesting as discovering what she has found out about N and us.
But the almighty upshot is she thinks we won't crack this without admitting to the hospital for about 3 months.
This will mean handing him over completely to a large extent - not just health, development - mental and physical, but also educational because over those 3 months, assuming he makes the required progress and doesn't back track at all, he will be living in the hospital. He will come home for ever very slowly extending periods but will continue to sleep and essentially live in the hospital - coming home for meal and snack times and going back in between.
Quite apart from what this may do for/to N, this has profound impacts for the rest of the family - totally upsetting W and T's own education, T's own health needs, but also seriously disrupting P's ability to work. Never mind the costs of all the running around combined with lack of income now that P is self-employed and if he's not working he's not earning.
Our only real part to play in dealing with N's eating will be weekly team meetings, and chats if we happen to be there at the times the relevant staff are.
And so we will be asking searching questions to find out about the programme and how good a fit it is for N.
There are a couple of other options which we can explore before we go back to the surgical option but one of those I seriously doubt we'd manage to sort out and the other is a very long shot and more of the same anyway.
So, in the 3 weeks we have before we see this doc again we are throwing our all into one last ditch effort - we being P and I really.
N has started with good intend but this is hugely difficult for him and much bigger that him.
We are breaking all the rules I ever made.
I feel awful doing it but if we are to keep from major disruption and potentially, maybe curing N, but definitely doing damage to the family socially, emotionally and financially which will take years to recover from then we have to try.
And that is how I now find myself insisting a child stay at the table until he has finished his meal completely no matter what he throws (occasionally literally) at me.
I always swore I would never do this, that food is aversive enough but at least he's happy to sit with us, that you do not - EVER - do things to entrench the negative and feared aspects of food.
But this is the only thing that we haven't tried yet, and what, as far as I can gather, they would be doing in the hospital anyway.
We have extensive star charts - he can earn up to 2 stars just for drinking his Fortisip so unless something goes horribly wrong he shouldn't have a day where he gets nothing. If he collects a star for every meal and snack for that day he gets a $1 in a jar which he can see from the table as a continuing incentive.
The rules laid down for achieving a star are written out and put on the wall where he can see it at the table so he's not arguing with us - it's simply the rules.
On Tuesday we started this 'toughlove' approach - it didn't matter what he said or did, he was ignored but kept at the table.
At lunch, the start of this, he took 1 1/2 hours to eat 2/3 of a slice of bread and peanut butter.
When he finally finished I went down to P's office and he commented I looked shattered.
But that was a walk in the park compared to dinner - 2 hrs and 40 mins over 80g of nachos. Screaming, yelling, tears, threats to throw up - including retching and apparently throwing up into his mouth twice.
It was horrendous.
It was so difficult to remain calm, not scream at him - or give in.
But there is so much at stake here.
Wednesday he actually earnt $1 for the first time in a week.
P kept saying how excited he was, that this time we've really cracked it and it'll be different now. I was counselling caution - I've been burnt too many times by one day wonder N. He specialises in sustaining something for even as long as 2 weeks and then relapsing.
And so P was upset today - 30 mins to eat 20g of ricies for breakfast, 1 hour to eat 1 boiled egg and 1/4 of a slice of toast and 57 mins to eat 100g of pasta and sauce.
The only stickers earnt were for drinking a fortisip for morning and afternoon tea.
I know that when you are trying to change an undesirable behaviour kids will intensify before they decrease - they test your resolve, make sure you are serious.
The figures are decreasing but I can't hope yet.
We have 2 more weeks before we have to go back to this specialist so that's time to test Mr 2 week wonder and see how we are truly going.
But it breaks my heart to do this this way. It goes counter to everything I do in my parenting practice. To hand a box of tissues to your sobbing child but refuse to let them leave the table - it feels so wrong.
I wish there was a gentler way but he's had a year of psych help and only got worse.
This has to be gentler than surgery.
I just hope with all my heart I'm actually not entrenching behaviours, adding extra negative stimuli and actually making the whole issue infinitely worse.
I don't like 'breaking' a child. But if we don't solve this then his whole future is 'broken'.
So wish me strength, determination and a stronger will to fight than N's not to eat.
He is truly scared, he's scared when you talk about food, visibly anxious when you start asking what his problem is, this really is beyond his choice range.
I can only hope that by making not eating a more aversive situation than eating he will eat.
But I have been shocked - watching him I have seen he pockets food in his cheeks and then doesn't seem to remember how to move it round and control it with his tongue. I'm hoping someone can wave a magic wand on that front and either he'll remember by muscle memory or they'll find us a SLT specialising in eating.
My gut screams this isn't the way.
But as far as I can see this is what they would do in hospital - and they reckon they'd get him ready for a meal and snack at home after about 2 weeks in hospital.
And so I have another 2 to see if it'd actually work.
This is the only thing we HAVEN'T tried so far.
And still my gut screams no.
But, like dealing with child tantrums, if you cave in after a bit then next time you come to crack it it will only be harder still - so we must continue.
Please send me wishes this works, strength to continue - and resilience for both N and I that the collateral damage, of which there has already been some, won't significantly damage our relationship.
But most of all, hope with me that my pretty well tuned parental gut instinct is wrong this time!
One thing I hoped for was fewer appointments for the kids - epic fail on that one! Between 10 Jan and the end of Feb we will have had 10 medical appointments and possibly more. That's 10 in 7 weeks.
We really spent January recovering and re-grouping after the maelstrom of events and emotions of December and I, for one, still find it incredible to think we're only 9 weeks out from the twins birth.
It has certainly added poignancy to N's birthday this year.
I commented to someone recently that you think of a month being nothing too much but the kids' birthdays and the gaps between that and their due dates always brings home to me exactly how big a stretch of time that really is.
N's birthday cake is nothing but photos, the cards are still sitting on the shelf but when they blow over I don't put them back up straight away any more, his birthday was 22 Jan - and he's still 7 days away from his due date.
A number of people we know have recently had babies and we're thrilled for them! It's a special and amazing miracle. One that so many take for granted.
I wish for them all that the 'normality' so many go into pregnancy and parenting, the blissful state continues unabated and undented.
I know I went into W's pregnancy like that and it is one of those things I think mothers especially, mourn after a premature birth - even if the baby comes out relatively unscathed, especially if you go on to have more children.
You know crap can happen and you no longer think it only happens to certain kinds of people. That blissful state no longer exists and you will never get it back.
So that's one kind of see-saw life has thrown at us lately.
Another is all N.
As those who have read this blog for a while know N has major eating issues. While I knew it was serious it still hurt when I saw, in print, in a paed's letter, the words food aversion.
We had got to the point, just before Christmas where the kids' surgeon had very very reluctantly agreed to put a g-tube in Nicholas so we could try to tackle the eat problems and get him off his Fortisip habit - now a 5 bottle a day habit.
The proposed date for surgery was today.
Obviously it's passed without surgery.
That light at the end of the tunnel has been snatched away - yet again.
What happened was the surgeon succeeded where the psych had failed and got a doctor who has extra experience in eating disorders to agree to see him.
He told me he'd managed that near miracle between Christmas and New Year.
And a week ago today he saw this doc for the first time.
I'm not going to go into huge detail here as we're still comprehending where we are at and are on a fact-finding mission at the moment, just as she is.
The next appointment in 2 weeks time when we fire all our detailed questions to her will be as interesting as discovering what she has found out about N and us.
But the almighty upshot is she thinks we won't crack this without admitting to the hospital for about 3 months.
This will mean handing him over completely to a large extent - not just health, development - mental and physical, but also educational because over those 3 months, assuming he makes the required progress and doesn't back track at all, he will be living in the hospital. He will come home for ever very slowly extending periods but will continue to sleep and essentially live in the hospital - coming home for meal and snack times and going back in between.
Quite apart from what this may do for/to N, this has profound impacts for the rest of the family - totally upsetting W and T's own education, T's own health needs, but also seriously disrupting P's ability to work. Never mind the costs of all the running around combined with lack of income now that P is self-employed and if he's not working he's not earning.
Our only real part to play in dealing with N's eating will be weekly team meetings, and chats if we happen to be there at the times the relevant staff are.
And so we will be asking searching questions to find out about the programme and how good a fit it is for N.
There are a couple of other options which we can explore before we go back to the surgical option but one of those I seriously doubt we'd manage to sort out and the other is a very long shot and more of the same anyway.
So, in the 3 weeks we have before we see this doc again we are throwing our all into one last ditch effort - we being P and I really.
N has started with good intend but this is hugely difficult for him and much bigger that him.
We are breaking all the rules I ever made.
I feel awful doing it but if we are to keep from major disruption and potentially, maybe curing N, but definitely doing damage to the family socially, emotionally and financially which will take years to recover from then we have to try.
And that is how I now find myself insisting a child stay at the table until he has finished his meal completely no matter what he throws (occasionally literally) at me.
I always swore I would never do this, that food is aversive enough but at least he's happy to sit with us, that you do not - EVER - do things to entrench the negative and feared aspects of food.
But this is the only thing that we haven't tried yet, and what, as far as I can gather, they would be doing in the hospital anyway.
We have extensive star charts - he can earn up to 2 stars just for drinking his Fortisip so unless something goes horribly wrong he shouldn't have a day where he gets nothing. If he collects a star for every meal and snack for that day he gets a $1 in a jar which he can see from the table as a continuing incentive.
The rules laid down for achieving a star are written out and put on the wall where he can see it at the table so he's not arguing with us - it's simply the rules.
On Tuesday we started this 'toughlove' approach - it didn't matter what he said or did, he was ignored but kept at the table.
At lunch, the start of this, he took 1 1/2 hours to eat 2/3 of a slice of bread and peanut butter.
When he finally finished I went down to P's office and he commented I looked shattered.
But that was a walk in the park compared to dinner - 2 hrs and 40 mins over 80g of nachos. Screaming, yelling, tears, threats to throw up - including retching and apparently throwing up into his mouth twice.
It was horrendous.
It was so difficult to remain calm, not scream at him - or give in.
But there is so much at stake here.
Wednesday he actually earnt $1 for the first time in a week.
P kept saying how excited he was, that this time we've really cracked it and it'll be different now. I was counselling caution - I've been burnt too many times by one day wonder N. He specialises in sustaining something for even as long as 2 weeks and then relapsing.
And so P was upset today - 30 mins to eat 20g of ricies for breakfast, 1 hour to eat 1 boiled egg and 1/4 of a slice of toast and 57 mins to eat 100g of pasta and sauce.
The only stickers earnt were for drinking a fortisip for morning and afternoon tea.
I know that when you are trying to change an undesirable behaviour kids will intensify before they decrease - they test your resolve, make sure you are serious.
The figures are decreasing but I can't hope yet.
We have 2 more weeks before we have to go back to this specialist so that's time to test Mr 2 week wonder and see how we are truly going.
But it breaks my heart to do this this way. It goes counter to everything I do in my parenting practice. To hand a box of tissues to your sobbing child but refuse to let them leave the table - it feels so wrong.
I wish there was a gentler way but he's had a year of psych help and only got worse.
This has to be gentler than surgery.
I just hope with all my heart I'm actually not entrenching behaviours, adding extra negative stimuli and actually making the whole issue infinitely worse.
I don't like 'breaking' a child. But if we don't solve this then his whole future is 'broken'.
So wish me strength, determination and a stronger will to fight than N's not to eat.
He is truly scared, he's scared when you talk about food, visibly anxious when you start asking what his problem is, this really is beyond his choice range.
I can only hope that by making not eating a more aversive situation than eating he will eat.
But I have been shocked - watching him I have seen he pockets food in his cheeks and then doesn't seem to remember how to move it round and control it with his tongue. I'm hoping someone can wave a magic wand on that front and either he'll remember by muscle memory or they'll find us a SLT specialising in eating.
My gut screams this isn't the way.
But as far as I can see this is what they would do in hospital - and they reckon they'd get him ready for a meal and snack at home after about 2 weeks in hospital.
And so I have another 2 to see if it'd actually work.
This is the only thing we HAVEN'T tried so far.
And still my gut screams no.
But, like dealing with child tantrums, if you cave in after a bit then next time you come to crack it it will only be harder still - so we must continue.
Please send me wishes this works, strength to continue - and resilience for both N and I that the collateral damage, of which there has already been some, won't significantly damage our relationship.
But most of all, hope with me that my pretty well tuned parental gut instinct is wrong this time!
Subscribe to:
Posts (Atom)