mind the gap

Tube Weaning

Another long absence

But not a boring one, that’s for sure.  Last post, I was at the end of my tether with all the professionals involved in Felix’s care.  He was back to vomiting multiple times a day, eating next to nothing, his gastrostomy site was leaking and causing skin irritation and stress, and he had become completely tube dependent again.  And nobody was really listening to me.  Everyone seemed to be passing the buck.  So I got a bit cross and complained to the community nurse (who really kicks ass) that I felt Felix was being side lined by his pediatrician, Dr Kn who never seemed to have any good ideas, always agreed with us but never actually did anything.  The nurse did some asking around people with more experience of leaking gastrostomy sites and was advised that the best thing to do would be to take it out for couple of hours to allow the tunnel to narrow then to put the button back in. As it would be stressful for Felix and nerve racking for us to do (what if it closed up a lot and we could not get it back in?) it would be best to do it in the hospital environment and to combine it with a dietician appraisal of Felix’s diet history both oral and tube to see if we could get to the bottom of his vomiting.  Great for the nurse for trying to sort it, but I did not fancy that much, as it had not yet been established what the cause of the leaking might be and the hospital dietician whose advice we would be getting had admitted herself at Felix’s last stay at Musgrove that she had no experience of blended diets.  She had also got Shap to sign a paper absolving the hospital of any responsibility should Felix get food poisoning – this was despite the fact that he was also eating hospital food – and gave him some literature on how to feed a toddler.  So I didn’t think that she would have much to bring to the party.   I then spoke to the stoma nurse at GOSH to see what she thought and she said that taking it out for a bit could work, if that was the reason it was leaking in the first place, but there can be other reasons and she would like to see it before she would advise taking that step.   She also suggested that we see the surgeon Mr K who did the gastrostomy along with the Ladds procedure back in 2009.

The next advice we sought was with Dr Sp, consultant pediatric gastroenterologist at Bristol Childrens hospital.  We had only seen her once when we first moved here from London.  A lot had happened since then.  She flagged up a new possible reason why Felix was saying that most food tasted ‘yucky’.  Aparently the group of medications called Ace Inhibitors used to lower blood pressure can cause a metallic taste in the mouth.  Felix is on a very small dose of Lisinopril once a day, but she said that could be enough to cause food to taste unpleasant.  This seemed to make sense to me as his appetite for food seemed to drop off the cliff in a few weeks of starting this drug after his valve repair surgery in November last year.  She also wondered if he actually needed the gastric meds since we (the parents) are convinced that a lot of the aversion is psychological and all wrapped up in the trauma of last year.  She also commented that from what we were saying, Felix seems to rule the roost in our house and that the power dynamic had to change before we could wean successfully. We had to be in control, show him who is boss, make him eat etc.

I am not sure how the ‘show him who is boss’ approach would work with Felix, as the more you push the more he pushes back and we would just be in battle after battle.  But we did trial the reduction and then removal of Domperidone and Ranitidine.  Ranitidine was unnoticable, and easy.  We had tried to get rid of Domperidone several times in the past when he was fully orally eating and it seemed that he did need it.  This time however, apart from going from 3 poos to 1 poo a day there seems to be no difference.  He was vomiting either way.

Next appointment was with Mr K, the general surgeon at GOSH.   He reiterating what the community nurse had suggested, ie. taking out the button and letting it close up for a few hours, in the hope that it would close up a bit so the tunnel would be narrower and less fluid could come out.  If that did not work, then the only option would be a new tunnel (and another general anaesthetic…)  We said that we intended to wean him as he had been eating before the heart surgery and we are convinced that we could do it again.  He said that we should wait until the school summer holidays when he was completely in our control and that as long as he was drinking, it should work out fine.  The big problems were with children who did not drink, then weans were difficult and prone to failure.  He said he was sure that it would work out fine.  He is retiring this month and so it would be the last time we would see him.  We both wished each other luck.

Then we saw the psychologist from the Compass team at Musgrove hospital.  She specialises in treating children and families who are dealing with life limiting or life threatening illnesses.  She has been supporting us since last November.  She is the doctor who said that Felix was stuck in his trauma and had PTSD.  She had proposed using a technique called Eye Movement Desensitisation and Reprocessing (EMDR) which though designed for adults was being used successfully now on children.  I didn’t quite get what it would involve, but it seems to be a combination of remembering the trauma while receiving out ward stimuli of bilateral tapping and eye movements which then somehow diffuse the trauma of the memory.  She felt that Felix had to get over his trauma before we could consider weaning him from tube feeds because she felt that without processing that properly, he would not have the space to cope.

Our regular check up with Dr S, Felix’s cardiologist was next.  We had a lot to talk about as the last time we saw him, Felix was very distressed, and not doing very well.  Dr S had said that there were no options left for Felix apart from a transplant since the heart function recovery had seemed to plateau and Felix’s body was not coping with the ejection fraction he was left with.   At the time we did not know it, but I think he was in the early stages of pneumonia.  It took another four weeks from then, for this to come to light, not least because as Felix’s condition got worse and worse, we thought that if we took him to hospital, we would then be starting the slide down to transplant, meaning a long hospital stay (possibly up to a year) while we waited for a heart. And so we thought that we would stick it out at home until we absolutely could not cope.  As you know from previous posts, that moment came in early March when he was struggling to breathe.  It turned out to be just pneumonia and within a few days of IV antibiotics at Musgrove hospital he was fine.  A couple of days in GOSH and some tweaking of his heart meds and he just got better and better.  Dr S could hardly believe the different child who trotted into his clinic in June, chatty and full of the joys.  The echo showed what we could already see in his behaviour and his increase in energy levels and stamina: his heart function had improved since December.

I told Dr S about all the various professional opinions that we had received about how to solve his gastric issues and his tube dependency.  He laughed and said they were probably all a bit right.  But of course, his expertise is all cardiac and as far as he was concerned Felix is doing great in that department.  I told him that I had been reading into the involvement of the Vagus nerve (one of the 12 main bunches of nerves that emerge from the brain into the body) in both gut and heart function and if he knew of any studies or research into the connection.  He said that he didn’t and that Felix’s combination of defects is in fact very unusual – he is in his late 50’s and has never come across a child like Felix before.  He said that they just don’t have all the answers, they are feeling their way too.  He emphasies how difficult it is to predict anything with Felix.

And finally Markus.  Shap was convinced that we could wean Felix on our own.  I was convinced that we couldn’t do it without Markus.  Dr Markus Wilken as any followers of this blog will know is a gifted clinical psychologist who travels the world weaning tube dependent children from their feeding tubes.  He worked with us in November 2012 and got Felix eating within 4 days, having never swallowed food before.  Speaking to him was like applying cool balm on sunburn.  Everything he said made total sense.  He said that of course Felix is the boss!  We cannot change that!  But we have to be his clever employers.  We have to gently persuade him so that he eventually comes around to the decision to eat himself, we can’t tell him to eat.  We need to make eating far more attractive than being tube fed.  As for the vomiting, he said that the Vagus nerve is irritated by tube feeding, sending confused messages to the brain.  I have spoken about this before.  Food arrives in the stomach without all the preliminary indications of eating (smell, taste, chewing, release of enzymes) so it is not expecting the food and the brain becomes confused as to what to do.  So it rejects the food.  He said it does not happen for all tube fed children but for those that it does, it can be as little as 200ml a week or 2ltr a day and the child will still vomit.  With Markus’s advice, Felix is now in school all day, including lunch (I had been picking him up to tube feed him at home then bringing him back in the afternoon).  Though he is not eating it, he is getting in the groove of the social scene and is coping amazingly with the noise and the smells and the chaos.  He has a 1:1 helper in school, but he is also starting to become more independent.  He is enjoying himself, and making friends.  He seems to be a hit particularly with the girls in his class who all want to mother him. He is by far the smallest in the school and wearing trousers for age 2 at the age of 5.  Markus’s take on Felix and his trauma is that the most important thing is time and being well.  The longer he feels well, the further the memory of the trauma will be from his every day thinking.  The preparation work the phsychologist from the compass team had done had resulted in Felix running from the room screaming.  Markus said when you have a wound you don’t want to keep picking it, and that the desire to eat will not be affected, as hunger can over ride anything.  Not too sure about that as my own appetite is very affected by stress and emotions.  I think with younger children hunger can be over ridden, but with Felix, we will have to wait and see.  Anyway,  we are going to leave EMDR on the side line for a few months, and see how Felix gets on without it first.

Tomorrow, school finishes for the summer and  Markus arrives on the 7th of August to be with us again for a week to work intensively weaning Felix back to eating.  Felix knows he is coming.  When we talk about it, he says ‘Yes, I remember him, he took away my spitoon!’ I say ‘He did, and this time, he is coming to remind you how to eat’.

So, almost 2 years later, Felix is 5 and 5 months (he was 3 and 8 months last time Markus came), he is older and wiser and been through so much, I can hardly even contemplate it.  He is almost back to 15kg which he last was in September 2012.  We don’t know if his compromised heart function or new meds will have an affect on his appetite.  We won’t know until we give him the chance to be an eater again.

It’s been a while..

…but a lot’s been going on.  We went on holiday over Easter with about 10 other families, both relatives and friends.  This is the third year we have been on this particular trip (some of them have been going for 20 years) and I was dreading how we would manage Felix’s bolus tube feeding and generally fragile health.  The previous year he was a newly fledged eater of four months standing,  and he made great leaps and bounds forwards in his repetoire.  This was when pasties, fish and chips and eggie bread became part of his ‘safe food’ list.  The first year, however, Felix was just 3, walking only a couple of months, vomiting multiple times a day, and on 18 to 24 hour pump feeds.  It was relentless.  The weather was fairly miserable back in Spring 2012, wet and cold and we ended up mostly house bound.  This year unexpectedly felt like a proper holiday.  Caitlin was much more independent, able to just get on with it, off out for the whole day with her friends.  We split caring for Felix up so that Shap and I had one day ‘on’ and one day ‘off’.  This meant that on your ‘off’ day, you didn’t have to even think about what was going on with him.  And your ‘on’ day was bearable, knowing that you would be free the next.  This meant that we did not have to constantly negotiate who was going to do what, when.  The rules were clear.  We both managed to get a few days of good surf and the sun shone (though it was cold) for the whole 10 days.  We also got Felix really walking.  We didn’t use the push chair at all, and went on quite a few walks in the dunes and along the beach with him.  He is still such a titch that carrying him is no problem.  He would walk a bit (3 or 4 minutes) then get a carry for the same length of time, before we would put him down to walk again.  The walks were between 20 minutes and an hour.  Shap had a technique of holding him awkwardly so he felt uncomfortable and asked to get down which worked really well.  By the end of the holiday, his legs were visibly changed.  So we have carried on not using the push chair at all.  It is very slow going, so we have to leave loads of time if we are going anywhere, but his stamina seems much improved.

His tolerance of tube feeds however seems to be deteriorating.  What we thought was the ‘sweet spot’ did stop his vomiting, but he also lost weight.  So we are now on the knife edge of giving him enough that he will grow and gain weight and not too much that he will vomit.  It is a very difficult balance.  His gag reflex is on a hair trigger.  The last 3 times I have tried to brush his teeth, he has gagged and vomited as soon as the brush is in his mouth.  All food is ‘yucky’ to him.  The other day he said ‘Mum, I absolutely LOVE food, but I just don’t want to eat it’.  He is obsessed by it.  Going through cook books, planning imaginary meals, watching TV chefs cooking.  Today he said ‘When I am finished with tube feeding and I am eating again, I am going to have a really big food party, a FEAST!’  I am really ready to do the wean.  But on Markus’s advice, we are going to wait until we have several months of no events, and of him feeling well, before we can attempt it.

Of course, just when we think we are doing well, Felix has a down turn – another one 2 weeks ago where he was lethargic, breathing fast, puffy, and then had what seemed like some sort of fit where he was unwakeable, his eyes were open and darting all over the place for a couple of minutes.  Though I think it could have been some sort of REM sleep, the paramedic thought not. He went by ambulance to Musgrove again, but all tests showed nothing, and he seemed to get better by the hour.  By the end of the day, he was fine.  There was very close liaison with Great Ormond Street, which there is now after the shame of Felix being sent home with ‘no obvious cause for malaise’ when he was in acute heart failure.. So he came home after 48 hours and has been fine since.

His general paediatrician (who in theory should be ‘in charge’ of Felix’s care)  thinks that he should ‘catch up’ on the centiles to the 9th, before we try to wean him, though I don’t think that is ever going to happen.  For me, his weight is not the issue.  It is more about getting his mind set right.   This is the consultant who admitted himself that he had no experience of hunger weans, in fact had never heard of the notion before I told him about it,  so I don’t really think he has anything to offer us on the advice front.  Felix seems to be on a new curve of the 4thC for height and between the 4th and the 2nd for weight.  But he is growing, and gaining weight.  Even with the vomiting, and I am sure the vomiting will stop once he is back to eating like he did before.

The gastrostomy site is leaking a lot at the moment too, and besides how stressed he gets by this, it is also affecting the health of the skin around it.  We have had a swab done a few weeks ago, and nothing grew, so it does not seem to be an infection which has been the cause in the past.  He is stumping the professionals as they cannot find a reason for it.  One of the suggestions is that he needs a new gastrostomy, that the tunnel itself is deteriorating.  I am definitely not going down that road.  Though he will have to take meds as well as food orally I am determined for that to happen.  He is very self aware, and he knows that the medicines he takes are to keep his heart working and his tummy working so I think he will be persuaded to take meds by mouth, though it will probably take a while to do that.

This week, I was interviewed as part of a UK-wide study aiming to improve community after care of babies coming home from hospital after their first heart surgery.  Some children have unexpectedly poor outcomes, one of the reasons for this is lack of knowledge and care in their local areas.    I said my two big issues were being sent home with a NG feeding tube with no plan other than maintenance and having no joined up care.  In particular, when another anomoly was suspected by the cardiac team in Felix’s first 48 hours of life (midline liver) why was there not further investigation?   The experts are highly specialised in thier field, particularly at GOSH, but for example, right now we are in the situation where cardiac specialists are saying that Felix’s current feeding difficulites and vomiting are unlikely to be to do with his poor heart function, but gastric specialists are saying that it is more likely to be because of poor blood flow around the gut and liver congestion rather than any motitly problems or reflux.  And so there is stalemate.  With no one except us ‘in charge’ of his care.

The researcher said that these two criticisms were flagged up frequently with other families in the study.  Particularly the feeding issues.  She said that already there is a proposal to have a new team at GOSH dedicated to cardiac babies/children and feeding issues, aiming to wean the children as soon as possible.  I wondered why this seemed to be a new phenomenon.  She said it was because of the advances in cardiac surgery, children are ‘weller’ sooner and therefore spend a lot less time in hospital than before.  In previous years, children were in hospital for months after open heart surgery while now it is usually 10 to 14 days.  In the past, the feeding issues would have been addressed and resolved before discharge.  While now, the children are back in the community fed through NG tubes with the expectation that feeding will resolve itself over time.  Of course, now the realisation is that this is not happening, and that children are becoming tube dependent.




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.


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.

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