mind the gap

Tube Weaning


September 21st 11am

I am sitting in Great Ormond Street hospital with Felix. He is prepped and ready to go down to theatre. He is having his pacemaker replaced as it has almost run out of power.

2.30 pm

And now I am waiting for him to come back out of surgery. They expect it will take about an hour in total, and he should be home again by the weekend.

I was totally dreading coming back here and going through all this again. Even though it is a relatively minor, low risk procedure, there is still all the stuff before the operation which is the same. Inserting canulae, taking bloods, signing the consent forms, and worst of all, taking him down to theatre and holding him while he goes under the anaesthetic. They always say ‘give him a little kiss goodbye, we’ll look after him now’ when you lay your unconscious child on the trolly. That usually starts the tears flowing if they have not already started. As it is just me with Felix this time, I decided I could not burst into tears as I gave my child over so did not follow their instructions.


And now we are back on the ward. Felix is really grumpy, at times hysterical.
His mantra of ‘I want to go home’ constant. Hopefully he will sleep well tonight.

This new pacemaker is made to last ten years under normal use. But because Felix is fully paced, (meaning that the machine does all the beats) they expect to get 6-7 years which is brilliant. The surgeon did however remind me that the full repair done in 2013 will have to be re-done within five years. Looking on the bright side, he shouldn’t need any more surgery for five years!

Shap has been doing all the appointments on his own recently. I handed over the reigns after I nearly lost the plot in February 2014. Being here now I am reminded of how the staff at GOSH really go out of their way to make the children feel less anxious. So much so that when I told Felix on Sunday he would be having the operation today he punched the air and said ‘yippee! I’m going to see my girlfriend (the play therapist Vickie) and they are going to cut me open with a butcher’s knife!’ Which just about sums it up.

I have also thought about all the kindness during the year of hell, 2013-2014. The staff behind the counter at Pret a Manger who gave me free coffee on seeing the strain and anguish in my face on many a morning. The friends who turned up at my house in Somerset between hospital admissions with meals and even breakfast lunch and dinner in a box. The family members, who helped out practically and financially when we really, really needed it. The London friends who popped in to the ward on a regular basis with food when we couldn’t leave Felix on his own for very long. And those that took me out on my nights off when Shap was staying at the hospital, who fed me, listened to my woes or distracted me, depending on my emotional needs. My nephew and his wife who really were my port in a storm. The night we were told that Felix might not make it and I knew I could simply not be at the hospital any longer or I was going to lose my mind, they took me in and cooked a roast, put me to bed in a fluffy duvet in a quiet room. The first time in days I didn’t have the pinging of heart monitors, feeding pumps and syringe drivers driving through my brain. To all of you, thank you.

September 22nd, 11pm

And now we are home, two days earlier than expected. Everything went smoothly. In the end,  Felix was only in hospital for 36 hours. He has a very neat wound, and though hobbling, is in good spirits. A few days on the sofa and he should be right as rain. For the first time in his life, we are no longer waiting for a date for surgery – his ‘big repair’ was looming since his birth and then there was all the other smaller stuff, some planned and some unexpected. In total Felix in his six years has had eight surgeries and ten emergency hospital admissions.  We still give him heart meds throught his PEG but we have not used it for food in nine months.  He is finally growing on a steady curve, his energy is good and he is happy. I think I can finally say ‘phew’.



This is my favourite time of year.  Both of my children were due to be born on the 7th of March,  though neither of them came on time. Caitlin’s labour was 72 hours and nearly ended in a c section, though I resisted.  Her heart rate kept dropping at every contraction.  She was finally pulled out by vonteuse with the cord wrapped twice around her neck.  Felix was born by emergency cesarean 10 minutes after I took the first tablet to induce labour.  I started a Braxton Hick (I had already been having them day and night for 3 months) which kept going without release.  Previously, this was a regular occurence, sometimes the ‘hick’ would last 10-15 minutes.  But of course, because of the concern over Felix’s heart defects I was already strapped up to a foetal monitor and the computer said it was a ‘hyper contraction’ because it went on and on.  The midwife hit a button, the room filled with people and despite my cries of ‘But it’s just a Braxton Hick!! I was crashing through doors on a gurney, being asked if I had any wobbly teeth.  Still, I look forward to March for the feeling of excitement, freshness and potential that the change in light and temperature brings.

But with ideas of birth, I also had to face death this Spring.  My amazing childhood friend Emma Fitzpatrick died on the 27th of February.  She was my age with two young children and had been diagnosed with Motor Neurone Disease in 2010.  This is one of the cruellest of illnesses.  It is terminal and life expectancy from diagnosis is 3 to 5 years.  It does not affect the senses but rather the ability of the brain to send messages to the muscles disintegrates.  So while brain function, sight, taste, hearing and sensation of being touched remain intact, the rest of the body shuts down so that the person is left entombed in their own flesh.  Emma was unusual  in that her ability to speak was the first thing to go, followed swiftly by her limbs. She communicated through an Eyegaze computer which she controlled with eye movement.    I only saw her once since her diagnosis, about 18 months ago, but we were in touch through email and she kept the most amazing blog which you can read here https://shapeshiftingemma.wordpress.com/. She lived in Kinsale in Ireland, surrounded by the love of an amazing family, group of friends and a team of carers.  Her ability to endure with dignity and incredible insight was an inspiration.  When the chips were really down in my life, I always thought of Emma, and felt lucky that at least I could hug my children, dance around the kitchen, shout and scream and laugh if I needed to.  I think of her every day.

Felix turned 6 last Tuesday.  I took a moment to reflect on how far he has come in a year. He was discharged from hospital on his 5th birthday (March 10th, 2014) after the previous year of trauma, (see posts from July 2013) and has not been back in since, apart from routine check ups.  He is surpassing expectations from all professionals in his progress and his general good health.  18 months ago, we thought that a heart transplant was on the horizon.  Now he is walking, playing, eating, attending school full-time.  He is really well and happy.

So, where are we now exactly? Felix no longer gets any feed through his tube.  Eggies are still numero uno. I have lost count of how many to date, but maybe somewhere not far off 700 eggs in eight months. He has them for most breakfasts, but he only takes them to school for ‘back-up’ lunch 2 days a week.  There are various meals on the menu the rest of the week which he enjoys.  School is the only place he will eat carrot now, (mine don’t taste right) and that, apart from potatoes as chips or roasties, and the occasional nibble on a corn cob, is all the vegetable he will eat.  I don’t know if I mentioned before that Felix has been diagnosed with severe red/green colour blindness, which goes part way to explain his reluctance to eat any green veg or red fruit.  He has often said in the past that spinach/broccoli looked like poo, and in fact to him, it does, look here to see http://www.neitzvision.com/content/colorblindworld.html, also http://facweb.cs.depaul.edu/sgrais/colorvisiondefi.htm

Currently, for dinner, he mostly eats the family meal.  Or at least bits and pieces of it.  This is sometimes followed by eggies, but often not.  He eats a packet of cheese and onion crisps every day and a plain tortilla wrap at least 5 times week. His current top favourite foods are home-made smoked salmon sushi (twice a week), chicken from a chicken and veg stir fry (he refuses the veg or the rice) with fiery hot pepper sauce dotted on, japanese noodles from a packet with sesame oil (basically posh pot noodle, but 450cal a packet so what’s not to like??) which he would happily eat for breakfast lunch and dinner, but we only allow it a couple of times a week as the salt content is pretty high.

He is having daily physiotherapy in school to help with his hypermobility and with his upper body strength.  He was gaining weight and muscle really well for a few months, then in early February got a stinker of a snotty cold with a chesty cough.  Though he was tired, we still sent him to school, and he was fine, but his appetite went down the pan which is his usual reaction to a virus.  He lost about 700 hard-won grammes.  He is slowly getting back up there, with the scales finally saying 16kg again after hovering back around 15.5 for a while (he was 16.3 in early January).  Though I don’t actually weigh him any more as it is just too stressful.  Shap does it and tells me only if it is good news.  Though I really don’t know why we bother as it wouldn’t change anything we are doing.

I am really desperate to get rid of the gastrostomy tube for good.  As Felix is totally refusing to even consider taking his medicines by mouth, it needs to stay for the time being.  It doesn’t help that Felix sees it as part of his body and can’t imagine life without it.  He was 8 months old when it was placed.  Taking Markus’ lead on how he weaned Felix the last time, (highlighting all the things he was missing out on by not eating), I tried listing all the disadvantages of keeping it.  I told him that It means that someone has to ‘fiddle’ with his tummy 3-4 times a day.  Apart from pushing medicines down the tube with a syringe,  the site needs to be cleaned with warm water and cotton pads and barrier cream applied twice a day.  It leaks and gets infected needing visits to the GP and having swabs taken and antibiotics given.  It is prone to thrush being a dark wet area which yeast loves.  It is irritating, often being a bit itchy and a bit sore at the same time.  It often leaks and while this used to cause him hysterical distress, he now calmly deals with it himself.  But it still is an annoyance.  And there are other incidental things like sleep-overs at friends, restrictions at PE..  The list could go on.  But he said that he doesn’t care about all the negative stuff.  He has decided it is a part of his identity.  ‘Mum, I can’t have it gone because that is what makes me different and I like to be different’.  So we are working along with school to try to find other things that make him special and different.  We are trying to move him on from the identity of being a sick kid.

Last week, as he sat on the toilet before he got into the bath he looked down at his naked torso and said ‘Oh no, my scars are gone, I want them back!’. They are actually still there, but no longer red and raised.  They are becoming pale silvery affairs. I quite mischievously said ‘Oh don’t worry Felix, you will need plenty more operations so you will get lots more scars’  He was quite pleased about that!!  I think his relationship to all that has happened over the last few years is quite complex.  On the one hand, it was very traumatic but on the other hand, he was the focus of so many adult’s attention for so long that he may have become a little addicted to the feeling.  A bit like giving birth.  Over time, all you really remember is the good stuff, the pain of labour fades away.

273 eggs later

It’s been 14 weeks since I last posted.  Felix’s health and progess in all areas is amazing.  He is in school full time, his stamina has improved to the point that he walks to the playground after school and happily plays for another hour outdoors after a long day.  Before, he would sit in the car with my iPhone whinging about wanting to go home while Caitlin played.

The daily physiotherapy he is receiving has improved his muscle tone.  His bottom which used to look like two wet tea bags is now fully rounded like a proper bottom.  His muscle tone in general is improving. His default setting is happy.  Sure, he still has tantrums, will bite and kick and punch (luckily, only Shap and I), but they happen less often.  His gastrostomy site is still leaking from time to time, but not nearly as much as before and he camly deals with it, often getting a tissue himself, and not insisting that he changes all his clothes.

But most importantly, he is eating.  The first two weeks after Markus left, he had a lot of ‘taste adventures’ where he tried and enjoyed a diverse range of food (even sushi).  But he then settled on eggy bread (French toast) with Worcester sauce.  So that’s a slice of bread cut into 4, soaked in 1 egg with a splash of full cream milk.  He has this for breakfast, lunch and dinner.  That’s 3 eggs a day, 7 days a week, for 13 weeks so far.  He gets a dish of whatever we are having for dinner as well, but he usually pushes it away.  Though he will eat some bites of other things like cheese on occasion, cheerios, chocolate, cheese and onion crisps, buscuits, chicken fried with soya sauce and garlic, chicken shashlik from the Indian take away, chips and battered cod, eggy bread is the main event. The last two weeks he has been having school dinners of which he will eat a bite or two, and then demolish his pack of eggy bread (he even eats them cold!) and a packet of crisps.  I would love to try and push out his horizons, somehow, but I am also really enjoying the relaxed meal times.  Felix is really happy with eggy bread as it is reliable, always tastes the same, and fills him up.  We have lovely chatty meals around the table. I am no longer stressed about whether he will eat enough or not as he always eats eggies.  We are still giving him a little tube feed when he is asleep, 100-150cals, mostly fruit and veg, coconut milk, almonds, salmon, and vitamins.  But we are not feeding him every night.  We have not told him we are doing this, though I suspect he knows as not much gets past him.  Recently, he said his favourite part of the day was breakfast, lunch and dinner.  That really is saying something.  He has started growing again and is gaining weight.  I don’t want to rock this boat.  I have not been in touch with Markus for advice about how to push forward as I have been enjoying the relaxed atmosphere though I feel it is maybe now time.

Weaning update

Markus left on Wednesday and Felix is eating. We are focusing on getting him to enjoy food and to be excited by it again, and to improve his skills, rather than the quantity . Markus said that amounts will increase over time as they did before. In order to take the pressure off him and so we don’t have to watch every bite, Markus has advised that we feed him 100-200 cals by tube overnight, along with some diorolyte preferably as soon as he is asleep. It is not enough to make much difference to his appetite, but it means he won’t wake up in the morning with a sugar low if and feel terrible. We will hopefully get rid of that last little bit of feed in a month or two. He is not eating massive amounts but he is enjoying what he is eating, making ‘nam nam’ sounds. He is very amenable to the promise of a reward (a bit of telly or a game on my phone), in return for a few more bites. He is getting his skills back and getting used to the quantities he needs to eat. Compared to 2012, when Markus was last here, Felix is much further down the line than he was on day 9. Back then, he would only eat Cheerios, chocolate, cheese, ice cream and pasta. While now, he is sitting up for family meals and eating a few mouthfuls (sometimes quite a few) of what we are all eating, though he usually finishes off a meal with a bowl of Cheerios. Dealing with unfamiliar textures and chewing is very tiring for him, so he sometimes leaves the table for a while, then comes back. Last time, he lost nearly 20% of his body weight, though he was quite significantly overweight before we started the wean, as he had been kept at the 50 th centile with tube feeding even though he was between the 25th and the 9th for height. By January 2013 his weight stabilised, and he settled on the 9th for both, and he carried on like that, completely tube free until July 2013 and his first cardiac repair, when it all went pear shaped. This time, he has only lost about 4% and seems to have already stabilised. Not having Markus around to continually bounce off is really hard, though he is on the end of an email or a Skype call if we need it. Apart from his amazing skills as a therapist, and his reassuring presence, he is very charismatic and brilliant company. We have had a lot of laughs through all the intensity. To use one of his apt metaphors, I am like a kid learning to ride a bike and the stabilisers have just come off, a bit wobbly at first, but soon it will feel like second nature. It is the same for Felix. And you never forget how to ride a bike.

Something and nothing very much

It is really hard to summarise or quantify what has happened in the last 2 days.  A lot of nervous relaxation (me and Shap) and a few choice words (Markus) interspersed with a flurry of activity around meal times.  Initially, the elephant in the room was that Felix needed to eat, but nobody was saying that.  We were waiting for him to realise that he had to eat.  Us saying that he had to would have just annoyed him.  He is a bright boy, he knows why Markus is here, he knows what he has to do.  So we let him come to the table, or not, it was up to him.  But he came, willingly.  Then he would leave after a bite or two to set up his own restaurant on the floor.

In the skype conversations with Markus, before his arrival, I had told him about the advice we had from the Dr Sp, consultanat gastroenterologist at Bristol Children’s Hospital about getting the power play in the house under control before we started to wean.  She had said that Felix could no longer be ‘the boss’.  Markus said that Felix could carry on being the boss, but we had to be his clever empolyers.  After 24 hours of observing our household dynamic, Markus said that in fact, we, his parents, were not his employers, but rather his servants and he treated us like that.  He had no respect, expected everying to be done for him, and took no responsibility for his actions because there were no consequenses when he misbehaved or demanded us to do things.  I greeted this revelation with wry humour as I was very aware this was how Felix saw us.  He has said on more than one occasion (in humour and planning to get a rise out of Shap and I) that he was glad he had Mummy and Daddy as his servants.  It would not take a rocket scientist to work out how this has come to pass – but Felix is now well, and so we really really (and according to Markus, Felix himself is actually crying out for this) need to stop his complete domination of the household.  It came to a head on Friday night when he got annoyed with Shap at the table (I can’t even remember what exactly it was for) and threw his plastic beaker at him, hitting him directly on the forehead.  Shap and I were both paralysed.  If it had been Caitlin, she would have been sent straight to bed, but with Felix, we really didn’t know what to do.  So from Saturday it was to be zero tolerance on bad behaviour, even though he was clearly hungry and angry, it was to be no excuse.

That morning, it was as if there was something in the air when we got up.  Of course, Felix could not have known about the conversation I had had with Markus as I was driving him back to his house the night before, yet he seemed to be looking for reassurance of our love for him as soon as he got up.  He was asking Shap for cuddles (that never happens) and he spontaneously told me that he loved me which is a definite first!  I was peeling some oranges and put some in a bowl for him while he watched a movie.  He said ‘I want them in a yellow bowl’, I said, ‘They are in a blue bowl, there is no yellow bowl available’ very firmly and he said no more.  In the past, things not being quite precisely right would have led to a tantrum, but he just took it.

Yesterday, we also started pointing out to him the consequences of his not eating for 3 days.  His trousers are loose.  I said  ‘If you carry on not eating for another 3 days, I will have to start buying baby clothes for you’

He said ‘You mean, I will shrink so much I will be a baby again?’

I said ‘Yes, you will just get smaller and smaller and be like a baby’

‘Yeuch, I have just had an image of what that would be like….. but at least I wouldn’t have to go to school’

‘Well, you would still be 5, a 5 year old baby, so yes, you would have to go to school, but you would be the smallest person there’

One of the things he wants to be when he grows up is a chef.  Markus said,’.. but chefs have to eat and to taste the food all the time’.  Felix said nothing.  Then we talked about what he might call his restaurant.  We chatted about various names, then Markus said ‘I know, it should be called ‘The Starving Chef’.  Felix got a bit cross at that point so we moved on.

And by yesterday, he has started to eat something at every meal.  Now we need to work on quanitities. Markus does not think that there is anything medical preventing him from eating.  If the Lisinopril was causing a bad taste, then he would be rejecting everying while in fact he is enjoying the few mouthfuls, even making ‘nam nam’ noises.  His body has had to go through so much that the hunger pangs he may be getting can be easily ignored.  He has spent his first 4 years on less than 80% oxygen (normal is 98 to 100) and though tired was able to function, so to be going on 100-200 calories  a day (we are tubing him 100ml yoghurt and 200ml diorolyle a night so that he doesn’t feel too awful and he decides to eat because he wants to, not out of desperation) probably feels fine for him.  He is playing and mostly in a good mood.  But we have kept screen time to a minimum and apart from a trip to the local play park, we have been just at home, life has to be a bit boring for him as if he is too diverted, then he can more easily be distracted from the task in hand.  However, Caitlin has been out and about with either Shap or I, mostly doing things that Felix would love to do.  He has a tantrum, but we tell him he can’t go because he has not eaten and therefore would not have enough energy to do the activity.

So, today was about sending home the message that yes, it is great that he is eating a bit, but he now has to eat *enough*.  He had a school friend’s party today, but we said he could not go if he had not got the energy as it was a soft play party and without energy, he would not be able to take part. He had to eat a good breakfast and a good lunch.  Markus talked to him in the play room and it became clear to him that Felix expected to go to the party even if he didn’t eat because this kind of consequence had never been put into effect before.  I must say that I found that aspect very hard.  I have never used these kinds of sticks and carrots with my children.  Yes, of course, I had used star charts and rewards for specific goals (bum wiping, teeth cleaning etc) but it goes against my grain to use threats of withdrawl of treats as punishment.  But it seems to be having a good effect with Felix in this situation.  He did not have a great breakfast, but he ate a bowl of cheerios at lunch when he realised we were serious.  He went to the party, had a great time, and made a good effort at the food, half of the chips and 3 bites of a fish finger!!  Shap had taken him, and said that in fact, he ate more than a lot of the other kids there.

So.. dinner tonight was home made pizza, which the children helped me make.  Felix had 2 bites and that was it.  But we took the pressure off tonight as he had made good progress today.  As Markus pointed out, if we keep harassing him, he might decide that actually, tube feeding is better after all as the adults are not constantly on his case and at least he gets to watch TV and have a cuddle when its happening!

So the next step is to get him to realise that he just needs to eat, that nothing is stopping him except himself, it is now TIME that he takes responsibility for this, and for his body.  As Markus keeps pointing out, he is not a baby, he is a smart 5 and a half year old, he can handle it.


No Deja Vu here

This wean has started off so differently as Felix is so wise and knowing.  But he seems to be totally resisting any inclination he has to eat, apart from a few bites here and there.  It is now 60 hours since his last tube feed.  He is drinking water, but nothing else.  He has mostly come to the table with enthusiasm, then had a couple of bites or no bites,  and said he was done.  Pretty much as he was doing before the wean. Though he dipped energy wise today and had to have a sleep, he has been amazingly well, good humoured and active.  He woke this morning saying he was hungry, but when he came to the table, he took the spoon for porridge and seemed to not be able to put it in the bowl, he seemed to be nearly about to do it several times, but then stopped himself.

Last night we had barbequed chicken with corn on the cob, rice and pitta bread.  Felix was really enthusiastic and was first to sit down.  Piled all the corn on his plate, had loads of bites and chews, but then overloaded his mouth and it all came out.  Then with the chicken, the same.  Markus noticed that he was only using his front teeth.  If you try it, it is really hard to move chewed food from your front teeth to the back of your mouth to swallow it.  So without much fuss, Markus just showed him the size of bite he should take and where he should put it in his mouth, ie in the molars.  It seems he has forgotten how to move food around his mouth.  We have one more meal to do before the end of the second day, fish and chips take away, an old favourite from his eating time, but I don’t imagine he will eat more than a few mouthfuls.  Markus said the reason he is not eating yet is that he just doesn’t want to.  He also asked Felix if he wanted some super soup, he said no.  He needs to decide himself that eating is the only thing to do.

Markus arrives tomorrow

And Felix so far seems very up for what is about to happen.  I took photographs of his last tube feed this morning and normally very camera shy, he actually did some groovy poses – a bit more cheese than the art photographs I was hoping for, but never mind.  This time, instead of reducing his feeds slowly over a week we have just gone from 100 % to zero in 24 hours.  Markus thinks this is the right approach for Felix as he has done this before, he remembers it,  he knows hunger, but has just forgotten what eating is for.  So rather than it being  like ‘cold turkey’ it is symbolic for him, the 60ml syringes that we use to deliver the super soup through his gastrostomy are in the bin.  For us though, it is a bit like what you feel when you are about to have your second child, soon after the first.  You know what it entails, there is no mystery or much magic, just hard work ahead, and you are already tired, and you can’t imagine how you will muster the energy required, but you gotta!

Markus has said that rather than a technical wean like we did in 2012, this one will be more artistic.  Which sounds delightful.  I am a good mixture of excited and nervous.  I will try and keep the blog updated, though as you might have noticed, I am finding that hard at the moment – rather than being cathartic and therapeutic as it was before, writing has become just another thing to do, almost a chore, though I am constantly thinking about what I might say in my head, I never seem to get to write it down.


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.

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