mind the gap

Tube Weaning

The sweet spot

The last week, Felix was really struggling with tube feeds, and his gag reflex and vomiting reflex was back on a hair trigger.  Bending over, a bad smell or a tantrum and sometimes nothing obvious would bring up a whole feed.  His cough is a lot better and yet he vomited every day from Tuesday to Friday, mostly in the evening just after his last feed, or in the night.  Once it was because of the toothbrush touching the back of his mouth.  And so by Friday, I thought that if he is losing a quarter of his daily intake, we might as well see what happens if we only give him 3/4 to begin with.  It has worked a treat.  He has more zip, he is more interested in food, and he has not vomited.  Day three of the new regime, and all good so far.  Of course, his calorie requirement is probably greater because his heart is working hard and his breathing rate is on the high side of normal, and he is taking in less calories.  This will probably affect his weight gain and his growth.  But right now, I think not vomiting is the most important thing.  He seems to have more energy than he had, probably because he is not feeling generally nauseous any more.  And more importantly, he is not nauseated by food.  He had his nose in a pesto jar for most of the afternoon.  He said it smelled lovely and wanted to know what it was made from.  I had to bite my tongue to not say ‘Why don’t you try some?’ or ‘It is great on pasta’ or ‘Do you want a spoon to stick in it?’.  I had to let him approach this new food on his own terms.  He has had a few chips, a few bites of cheese and a sip or two of milk today.  So, I am just going to see how it goes.

In no particular order – Mothers day, gay marriage, and vomiting.

Mother’s day yesterday and I had lovely cards from both children that they had made at school. Felix’s had a heart inside with typed ‘I love you because…’ and hand written (with help) was ‘….you give me super soup’. I had a tear in my eye and said ‘Wow Felix, that is amazing’. He said ‘I put that in because I thought it was funny’.

 

Caitlin’s one thanked me for her great birthday. Later on in the day, she and I were reading the Sunday papers which were full of news and reviews on the new law legalising gay marriage as of 29th March. I was trying to explain to her how amazingly exciting it was that a woman could marry a woman or a man could marry a man now, when just a few years ago, you could actually go to jail for being in love with a man if you were a man. Then I mentioned to her all our friends who are husband and husband, though I don’t have any wife and wife close friends to aid the explanation.   Anyway, we both got into a bit of a pickle with my desperation to explain things appropriately and her desperation to understand. We looked at various pictures of newly wed celebrations and in each one I asked her which gender the couple were. She was adamant that butchly dressed women were definitely men. Then she was silent and after a while said. ‘Does that mean that you and Dad have to split up now?’   She thought that the law made it compulsory to marry someone from the same sex, and heterosexual coupling was no longer allowed. I could not stifle the guffaw that exploded out of my mouth.

 

Felix’s recent occasional vomiting unfortunately happened at school today. He has a cough at the moment, but as he also has a snotty nose I think it is just a cold. Though it might be the pneumonia working it’s way out. Does that happen? My understanding is that a normal chest infection is just in the bronchial tubes but that pneumonia is right inside the alveoli, so I don’t know if it just gets reabsorbed into the body or if it gets coughed up like flem. He was not actually coughing at all with the pneumonia. He only really started in the last week or so which makes me think it is just a recently acquired cold. He is well in himself. So I think the coughing and the mucous is causing the vomiting. He is so au fait with it all now that he knows it is coming and can ask for a bowl. So today at school was a very neat affair, totally contained with no spillage or spoiled clothes. School policy is that the vomiting child has to go home straight away. Which is fair enough. It might be a bug. But thankfully, they agreed to give him the benefit of the doubt that this is just his hair trigger gag/reflux made worse by the cough, and have waived the 48-hour exclusion. Hopefully the coughing will recede and with it the reflux. Though once again, it makes me really anxious to get him back to full oral eating as soon as possible.

MOT at GOSH

People have been asking how the review at Great Ormond Street went, a couple of weeks ago, and you know, because I had given over the responsibilty of that to Shap, and stayed behind to look after Caitlin, I had not been focused on it.   They could see no reason from a physical point of view for his recent difficulties.  They reiterated that the pneumonia was probably caused by a slow build up of fluids that then became infected.  So they increased his heart meds to offload his heart so it won’t have to work so hard, which seems so far to have had a great effect.  His kidney function will need to be monitored of course, but so far, so good.  They said his overall heart function seems to have improved slightly, but it will take another year or 18 months to really gauge what the funtion might be.  Because his combination of heart defects is so unusual, and the Senning-Rasetelli double switch so rarely performed here in the UK, there is little data.  And as we are always being told, each child is unique and so is their anatomy and how the rest of the body copes with the new circulation.  So how Felix’s body adapts may take some time to discover.  Though right now, I think we are seeing his ‘base line’ of wellness.  He is in a great mood, and the tantrums are slowly diminishing.  I overheard a chat he had with Shap tonight about being able to run.  He said ‘After my  ‘running operation’ (what he called the first surgery July 2013) I could run really fast.  But now, I run really slow’.  Yes, but at least he can run a little, three weeks ago he could not get off the sofa.

A good two weeks

Felix is getting incrementally better as the days go by.  The pneumonia seems to be receding, an x-ray last week showed that there was still some there, and another today, the results of which we have yet to hear.  His heart meds have been tweaked to help reduce fluid building up.  His energy is the best we have seen since last September.  We are still tube feeding him.  I spoke to Markus who advised that there was still too much going on to wean him.  He said that we need to have some stability established before attempting it.  So I am thinking now, realistically, if he remains stable, that it will be the summer holidays before we will have the chance and the time to dedicate to it.  It will be very hard to say good bye to all the amazing food I am managing to whizz up in my new Vitamix, donated by the company (thanks a million Vitamix) who have a very generous policy when medical and financial needs can be proven (they retail at £600).  Tonight, I whizzed up a rainbow of lentils, kidney beans, coconut milk, kale, red and yellow pepper, apple, pear,  flax and sesame seeds, bio yoghurt, hemp oil, whole milk and honey.  It tasted absolutely delicious.  Tomorrow’s ‘super soup’ will be chicken breast, sweet corn, quinoa, avocado, plum, sweet potato, broccoli, olive oil, sunflower seeds and whole milk.  When the time is right, it will be hard to go back to cheerios, cheese and pasta.  But you never know, perhaps his body will ‘remember’ how good it felt with these foods on board, and crave some broccoli……. He is still saying he feels sick from time to time, and has vomited on occasion, but is far more tolerant than he was before.  He must have felt so rotten, and of course his liver was under pressure as well as his heart struggling to cope with the strain.

So, a few little things to share that he has said over the last couple of weeks.

‘Mum, I think I have my outdoor mojo back’  as he played in the garden for the first time in months.

‘ School is kinda fun’ having kicked and screamed not wanting to go for weeks, probably because he felt so awful and it was all just too much.

‘Is it time for super soup?  Super soup is yummy in my tummy’….. well..

‘I don’t need the push chair, I want to walk’ when we parked near the local village shop.  So we left it in the car, though he did need to be carried after about 20 paces, but still, he felt he could do it!

Gearing up for the blood test today, (which he knew was on the cards since he overheard Shap and I talking about it on Monday) he was at first really upset.  Then he said ‘I am not going to worry about it until I have to on the day’… and he didn’t.  He was brilliant during the process, practising a new breathing technique that the play therapist showed him.  Wow.  I wish I was that mature.

‘The best Birthday present, and I didn’t have to unwrap it!’

Felix turned 5 today and was unexpectedly discharged from hospital.  He is in such a better condition than when he went in 5 days ago,  I can’t believe that we let him get so poorly.  I think it happened so slowly, in such tiny increments, probably over about 4 or 5 weeks, that we didn’t really see it.  This is probably because we have not yet established a base level of wellness for him, so we accepted his very limited energy, refusal to walk, and breathing hard as being perhaps as good as it was going to get.  But I am starting to realise that there may never be a steady base from which to judge his health. His life will be a lot of ups and downs, rather than a solid line.  We are taking him to Great Ormond Street tomorrow for a day of assessment to see what is happening with his heart.  I am trying to stop myself from speculating, but I reckon either the valve has become more leaky or the ventricle is pumping less well than before, causing the build-up of fluid.  Or more optimistically, perhaps there is not much significant change and the pneumonia was isolated, a one off.  He is still grunting a little,  but not nearly as much as before.

I have had a couple of epiphanies the last few days.  Firstly, there is no point in waiting until Felix’s situation gets better to get on with things.  This is how things are now.  There may be better times, but there will definitely be worse times.  We have just got to get on with life as best as we can, trying to build in things that we enjoy, and to develop some sort of infrastructure of support.  The second thing is that what happens to you in life is often out of your control, but how you deal with it is within your control.  I am not sure if some sort of self preservation instinct has kicked in, or maybe it was because Shap did most of the caring for Felix during this recent hospital stay (while I looked after Caitlin at home) that has allowed me some perspective.

Back in the wars

It has been a while since I posted.  I have spent the last few weeks watching, waiting and worrying over Felix’s deterioration.  He wanted to do less and less, refusing to walk more and more, breathing hard, feeling sick and actually vomiting for the first time since he was last in hospital.  All the time, thinking ‘is this a cold?’ ‘Is he just working me because he doesn’t want to go to school?’    He was not getting off the sofa for the last fortnight, and then the last couple of days, he would slither out of bed in the morning and just lie on the floor, needing to be carried even to the kitchen.  All food was yucky.  Tube feeds made him nauseous.  Then when he started having breathing difficulties in the night on Tuesday, and his face became puffy, I thought, enough is enough.  We took him to Musgrove yesterday and an x-ray immediately revealed that he had a shadow on his lung that looked like pneumonia.  It could have started out as a collection of fluid due to his impaired heart function a few weeks ago, but then became infected.  So he was started on a course of IV antibiotics and diuretics and by today has improved enormously.  The question now is whether this is due to his heart function deteriorating further or whether it is an isolated incident.  After 5 days of antibiotics he will go to Great Ormond Street for a full MOT to see under sedation what is going on and what they can do, if anything.

I have handed over the driving wheel to Shap, and what an unbelievable relief it is.  Before now, I had to be there with Felix all the time, be totally involved in everything, asking questions, making sure drugs were administered on time, trying to get some control, or at least feeling of understanding a crazy out of control situation.  If I missed doctors rounds and Shap was there, I would be totally frustrated by his inability to relay word for word what was said.  I am too depleted to cope with that intensity now.  Shap is able to focus on the moment, and doesn’t spin out on all the possibilities like I do.  For my own sanity, I have had to let it all go, and to focus on Caitlin, while Shap takes charge of Felix.

‘Food makes poo and I don’t want to poo any more’

Shap says I read too much into Felix’s little comments.  But the above is what he said having had to go to the toilet in the middle of dinner.  He had had one single bite and then that was it, he refused to come back to the table afterwards.  I worry that because he was only 8 months into his eating career (age 4) before all the messing around with his surgery and tube feeds started, he had not really established a good relationship with food yet, it would probably have taken years.  I worry that his relationship with feeding his body, both orally and by tube is so messed up that we can never bring it back.   Shap ever the optimist, thinks we can, and by ourselves.  He thinks that it is something we may have to do several times as looking at what the future might hold for Felix, he may have to go back to being tube fed at times of ill health.  A really depressing thought.  I,  on the other hand, think we need someone with expertise.  As we know more on the subject than any professional we have locally, I have been trying to get hold of Markus for the last 10 days, but have had no response.  He may be away doing an intense wean in some far flung part of the world.  But the whole thing is totally eating me up and doing my head in as I really really don’t know what we should be doing.  Carrying on tube feeding indefinitely seems totally wrong as he hates it so much, and apart from once when he asked for it, he mostly screams and cries when he sees the syringe coming out – the star chart worked for a bit, but no more.  The reason we went back to tube feeding in the first place was to ensure top quality nutrition while he was recovering from heart failure and surgery, and to get his weight back up to a reasonable level.  Yet I am not sure the time is right for a full on wean attempt, though it has been three months.  There is so much going on for him psychologically (a psychologist who we have started seeing as a family has said that he has a lot of the symptoms of post traumatic stress disorder).  His total oral intake for today is precisely 1 bite of chicken, 8 twiglets, 125ml of hot chocolate, and a lot of water.  We have started doing the evening tube feed when he is asleep and while not ideal, that means at least we have one less battle.

Weirder and weirder

So, after skipping two tube feeds, and being hungry for ‘super soup’ last night, this morning he ate half a bowl of twiglets for breakfast, followed by tube feed.  He wanted fish and chips for lunch, but only ate 4 or 5 chips.  This afternoon he complained of feeling sick.  I thought ‘He’s hungry, but he has forgotten the feeling’, when suddenly he started heaving and vomited.  Not much, but still.  He said it was the smell of my cooking that did it – I was melting butter before putting in the veg for soup and it got a bit burned – burned butter is a horrible sticky pong, so I could understand that.  But then 2 minutes later, he asked for for ‘poo pasta’.  This is what he calls fresh pasta filled with ricotta, ham and mushroom because of what the filling looks like when the pasta is removed.  It only comes from one supermarket 10 miles away.  We have not had them since last September.  He likes to eat them raw, straight from the packet.  Luckily I had some in the freezer.  I pulled out a few to defrost on a plate.  It took about 15 minutes and he kept asking, ‘Are they ready?  I’m starving..’ He is wolfing them down now as I write, making nam nam noises.

Sometimes I feel really hopeful that full oral eating and good energy with no weird grunting spells is just around the corner.  Other times, I feel baffled and confused trying to figure out what is going on, and what the future might be.

‘I’m hungry for super soup!!’

The last couple of weeks have been a bit of a struggle.  Felix is really hating being tube fed.  So he won’t let us have access to his gastrostomy port.  When he does eventually, he complains of feeling sick almost immediately.  He has vomited twice in the last couple of days, once because he was having a mega tantrum shortly after a feed and yesterday, he seemed fine, but then in the bath said ‘Get me a bowl, I feel sick!’ and the whole feed came up.  The danger of ‘crying wolf’ is lost on him, but mostly when he says he wants to vomit, he looks fine, and shows none of the signs of nausea, and nothing comes up.  We can’t really tube feed him by force, it just seems all wrong.

We started a star chart for ‘good super soup’ and it did seem to help his tolerance, but the point is, we all want him back to eating food.  But the perennial question remains: will he eat enough?  Is his intermittant grunting and complaining of pain,  to do with being tube fed, is he refluxing?   Or is it to do with his heart function? Or maybe it is just about control, forbidding us access to his body, trying to get command of it again after so much has happened to it?  How much is psychology involved and how much physiology?

We saw his local paediatrician last week who agreed with everything we said but had no solution to offer except to increase the dose of ranitidine and to do a PH study to check for reflux. We declined the PH study as I can’t see Felix complying in any way with having a probe passed through the back of his nose down into the top of the stomach and taped to his face and being attached to a monitor for 24 hours considering how traumatised he is now.  I also think it is pointless as he did not have reflux when he was orally eating and I am sure he will not once he is weaned again.  The same paed did not think it was a good time to try a wean because his weight is below his height on the charts.  Ditto the dietician.  Though these were the same people who had never heard of hunger weaning until I told them about it, or had any idea how to get Felix to eat when we were at the end of our tether in 2011/2012.  My own gut says that we need to get him off the tube ASAP now.  Though I am not sure I am ready myself for the battle.  Incidentally, we have started to see a physiotherapist for his hypermobile joints and she said that his shoulders and hips are tiny.  His frame is really slight.  His body type does not easily gain muscle. He is never going to be a big guy.  The weight that he has gained is all around his middle, his arms and legs are as skinny as ever, though he has been pretty active, and his stamina for walking is increasing.  Though he does have days with little energy and he is back to napping in the middle of the day on occasion.

Last night, as Felix was protesting so much, we decided not to do any tube feed.  We said, ‘Felix we are going to give you a break for a little while’.  You would think that we said that it was his birthday, such was the joy he displayed.  He slept well and this morning asked for drink after drink after drink of water (empty tummy feeling that he has forgotten what to do with?  Quelling hunger with liquid?) and announced that he wanted to bake mini cup cakes.  Which we did and he stayed helping the whole time.  Then he sat on the sofa in the kitchen watching them rise in the oven while the rest of us ate breakfast which he had declined.  When they were done, he ate 3 whole ones and a couple of bites out of 2 others.  Then he had a few bites of a pasty at lunch while out and about with Shap and Caitlin.  He came home starving and demanding dinner at 4.30.  We were all hungry so I got it ready and we sat down to eat about 5.15.  In the mean time he had been hassling and hassling for it to be ready.  When it was finally on the table he ate 2 or 3 bites and said ‘I’ve had enough’.  An hour later, he asked if he was going to have any super soup.  When we said ‘Yes’, he said ‘good, because I am hungry for super soup’.  AAARGH!  This is so totally messed up.  In some ways, it is good, as he is feeling hunger, but his interpretation of the signals and his solution to it is confused to say the least.  How the hell do we get back from here?

It’s all very mysterious

Felix has been doing some good walking, especially when I am not around.  A friend had him for a few hours yesterday and I had forgotten to leave the pushchair.  She said he did amazingly.  He did say quite a few times ‘I’ve run out of coal’ (being a steam engine) but she distracted him and then he could go a little further. He didn’t ask her to carry him. Today with me was similar.  He walked for about 6 minutes, then wanted carrying, but instead, I lifted him onto a low wall to walk along (while holding his hand of course).   But he was not out of breath, well, maybe a little, but fine.

But as for the grunting and pain, the symptoms continue.  He himself says now that it is in his tummy, not his heart.  So I am thinking it HAS to be gastric related.  It is the only thing that makes sense, as he has had another cardiac MOT last week and there is nothing that would cause these symptoms.  When we weaned him off his feeding tube in November 2012, we very quickly weaned him off Lansoprazole and Ranitidene. Though we tried to get rid of it several times, he seemed to still need Domperidone.  Ranitidene is given routinely to reduce stomach acid after surgery while the bowel is sluggish, so that was reintroduced in July.  We dropped it just after Christmas and then his appetite seemed to wane.   I am thinking now that our ‘super soup’ tube feedings are causing reflux to flare up again.  We are feeding him about 1,250 cal per day, in 2 bolus.  He is eating a tiny bit on top.  Given the choice, he would probably eat a lot less cals than that himself.  And that is the problem – we want to have a buffer of a bit of weight before we start that process again, as it is likely he will lose 10% (it was nearer 20% in November 2012, but he was overweight – on the 50th centile for weight while on the 25th for height – now he is on the 7th for weight and the 9th for height)

I have read accounts by other parents that reflux seemed to get worse for their children (or appear for the first time) once tube feeding started.  With a nasogastric tube, the oesophagus is held open slightly all the time by the device, allowing gastric fluids to regurgitate.  But with a PEG, it should not be the case.  However, as we have experienced before with Felix, I think the very act of placing food inside the stomach, without all the preliminary actions of smelling, chewing and swallowing, must mess with the message centre of the brain.  While he is not vomiting, he is really uncomfortable.  Sometimes though, when he says ‘I feel sick, I am going to vomit’ I think he might just be feeling a bit hungry and has forgotten the feeling as it us usually late in the afternoon, (6 or 7 hours since the tube feed) that he says it.  This is also when he is doing most of his grunting.  I think he might also be dousing his hunger with water as he is drinking a lot.  Or maybe he is really feeling sick….

I hope that weaning him again will sort it out, but in the meantime, I am going to suggest he is put back on Lansoprazole to reduce the stomach acid.  We have an appointment with his local paediatrician next week and I am still trying to chase the gastroenterologist at Bristol Childrens who we have seen before to get her input.  It would probably make more sense to have a gastric specialist at GOSH involved,  though my experience of having ‘joined up’ care between the different departments there has been patchy.

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