Jaxon, my two year old beauty, hasn’t eaten orally since he was 3 months old and now I’m embarking on a private tube weaning programme run by a team in Austria which I’m hoping will change both of our lives (so, no pressure!). It’s been a while since I blogged but this feels like the right time to return and share with you our experience, thoughts, feelings, progress, difficulties and the whole process whether you’re here to learn about tube-feeding, tube-weaning, a curious mum, a family member of ours, someone who donated to the fundraiser that enabled us to access this programme or a passer by. Let’s go..
Even before he stopped feeding orally, he struggled. He lost weight in the first few weeks which never got put back on. He had a nasogastric tube (down his nose into his stomach) for “top ups” which didn’t seem to do much as the boob doesn’t come with a measurement chart to know how much he needs topping up by. He was failing to thrive after just days on this earth and ‘breast is best’ became the most ignorant statement I’d ever heard.
Once we could measure his intake on the bottle it didn’t get much better. It would take an hour to feed 70mls with a lot of cheek tickling, teat wiggling and visibly a lot of energy his end as he would fall asleep midway through. When brochitus hit his feeds stopped and the tube became permanent. One diagnosis after the other and his reflux got worse and worse. Whole meals were vomited and when fed small amounts every hour of the day he would vomit up to 50 times on a bad day. After a few months he had a percutaneous endoscopic gastrostomy (PEG) fitted.
Fast forward to him being 2 years old and his mouth is a place that has nothing but a negative experience for him. It’s a place fluids come up and choke him. A place that scares him. A place that causes him panic and fear. A place that takes his breathe away as he feels like he’s drowning on a regular basis. He has no interest in putting food into his mouth. I don’t think there’s any understanding of why he would want to. To him it’s a place for food to come out, not go in. He’s a clever boy, he watches food go into his tube daily. No doubt he feels a sensation when that happens. Since switching to a blended diet during the day (I blend home made meals into a consistency that can go through his feeding tube) he has three meals a day which I believe has created gaps so that he feels the difference between when he’s fed and when he is not fed. There was a time I gave him a wotsit and he pushed it towards his feeding tube. I didn’t know whether to clap and gush at the thought of him having such an understanding, or cry at the abnormality of it.
What hasn’t worked
I have tried to offer Jaxon foods. He was in hospital for the majority of his first year so it was hard to give him the normal experience of dining. He was severely physically delayed and couldn’t hold his head until he was one year old, so there were physical challenges as he couldn’t sit in a high chair. There was always a medical issue ongoing that would hinder any desire to eat orally and of course the medical side of things always took priority. I was always consumed by so much that was an immediate threat to his health and wellbeing that eating orally was simply at the bottom of the priorities. He was being fed regardless after all.
It felt for a long time that professionals were happy with the feeding tube as it gave them exact numbers of his intake which was beneficial when it came to working out his weight loss, his reflux, his feeding plan, his electrolyte imbalances and everything else.It didn’t help that our local hospital didn’t have a speech and language therapist to assess him so although he had been referred for the service, it was a professional in the community who wasn’t funded to go into hospital so we only managed to see her once in his first year.
It has hurt that he doesn’t eat, though maybe not as much as one would imagine. Like I say, there were bigger fish to fry. However, over time it has become more of a hinderance that has become more noticeable as our life at home has stabilised but his care plan revolving around his feeding has been arguably worse that the first few days of having your first newborn baby that feeds every few hours.
There’s various limitations to Jaxon eating orally. As I previous described, Jaxon doesn’t have any interest in putting any food in his mouth due to what I imagine is a mix of negative experiences orally (known as an oral aversion) and a lack of understanding. I often describe Jaxons oral aversion to those unfamiliar with the scenario by explaining that to him, asking him to put food in his mouth is a bit like telling you to put a carrot in your ear. It isn’t appealing, doesn’t make any sense and there is no imaginable positive outcome. Basically, why would I do that? Over time, Jaxon has got more annoyed with food offerings. He always batted the spoon away but now he’s 2 he point blank gets pretty angry with you for trying.
His speech and language therapist explained that from their professional input there isn’t much they can do due to the fact Jaxon won’t allow us to go near him. To give a little insight to that, Jaxon won’t let anyone near his mouth. If it’s food it gets batted away and a very angry face. If it’s given to him, he throws it, with a very angry face. If it makes contact with him, he screams. I’ve tried food play. I’ve tried pieces of equipment. I’ve tried eating at the table with him. I’ve tried offering him items and looking away to relive any pressure. I’ve tried the Z Vibe which is made to desensitise the mouth. I’ve tried desensitisation exercises. I’ve a draw full of various items that are supposed to aid weaning with no luck.
Somethings have been tolerated with time. He’s very good at tolerating food around him. There’s a steps chart that SLTs use to assess where a child is at with their oral feeding and the very start is tolerating food in the same room so we’ve got that one. Since turning two he’s suddenly got better with allowing me to touch around his mouth with my finger and hands. I think this is because I stopped trying to do food with him and just played games and sung songs that involves touching his face and around his mouth which I guess built up trust that I wasn’t doing it for an alterior motive and I can now touch his front teeth for a brief second on a good day. Not quite anywhere near toothbrushing but closer nonetheless
The Tube Weaning Programme
I heard about the NoTube feeding programme when Jaxon was around one year old. It was a dream. I didn’t even know it existed. A place you could take your tube-fed child in Austria for two weeks and potentially come back with them eating and have their tube removed. Sounds like bloody magic! But I was fretful. It sounded too good to be true. Though the logic made sense, reducing feeds to encourage oral feeding it was a scary thought.
His weight is still an issue. A year old and he was still failing to thrive on the bottom centile with not enough time in the day to get in the calories he needed. At one year old he weighed 8kg. It took me another year to get him to 9kg, just after his 2nd birthday. Suddenly he was 10kg within a couple of months and I thought it may be the start of a climb up the centipede but it soon fell back to 9kg. A mix of his heart taking a lot of energy, his electrolyte imbalances which are known to make weight gain difficult and now his mobility as he’s more able to get around and burn calories. The kid doesn’t bloody stop and it takes him every limb and twice the effort to get from A to B but he does it, over and over and over again and I just watch in awe at his ability and despair at the weight falling off with every pant for every bum shuffle!
Well. As I’ve grown a larger audience, I’ve heard more feedback on the feeding school which of course gives it more credibility and also instils a little confidence in my own decision making which is questioned by healthcare professionals here when I mention the school. They all think it’s a drastic and unnecessary measure. However his feeding plan is insane and has been described as unsustainable which I agree with. It’s the hardest part of his care. Tube feeding limits his foods to items that can be blended to a perfect runny smooth consistency. In doing so a lot of liquid has to be added which increases the quantity which is problematic for a child who can only tolerate small amounts due to reflux and gastric emptying problems. Not to mention that doing so reduces the calorie density that he needs for his weight issues. For a year I’ve heard professionals say what he needs but with no real answers of how to give it him. I’ve heard the same professionals refer to the tube weaning programme as ‘drastic’ and ‘extreme’ but I’m the one providing his care and seeing him every single day. No one seems to have any answers for how I can improve his life, his care plan or his oral feeding.. except this programme.
I applied for the programme telling myself that if he wasn’t accepted then that was our answer, but that if he was, then we would go ahead. Sadly Jaxon wasn’t accepted to the feeding school in Austria due to his medical complexities. I was devastated at the time. They offered me a netcoaching programme for a similar price but longer period of time. I didn’t see the point. I was already limited for time in the day with his care plan, I couldn’t imagine then liasing with more professionals on a daily basis and adding in me teaching him to eat on my own alongside appointments and our day to day life. The feeding school had appealed for its two week getaway in which our day to day activities, restrictions, appointments and distractions would be cancelled and we would either come back with him eating or not. This felt like more work and less chance. The feeding school assured me it has the same success rate and that they thought Jaxon would benefit from it. The longer I thought about it the more I came tor realise that it was our only option and I would it more if I didn’t at least try.
What difference would it make?
I currently spend roughly 5 hours a week cooking and blending his diet which takes 3 hours a day to feed him on top of the 5hours of bolus water feeds and 8 hours or formula milk feeds. To say it’s not ideal would be an understatement.
We recently took a trip abroad which highlighted not only the care needs but the practicality. I travelled alone, I’m a single mother, I knew what I was getting myself into trying to provide a 24hour care plan to a child on my own for 5 days but what really hit me was the reality of how limiting it is practically. We had to stay in an apartment so that I had a kitchen to cook and blend food and we couldn’t go on any excursions as I needed to be able to transport his feeds and keep them at the right temperature. I thought about the fact if we went out for the day and got stuck I couldn’t just grab him some crisps from the shop. Meeting his needs for the 5 days the best I could he still lost 0.5kg in 5 days. His bodies needs are far more than I alone can provide.
My only hope is him eating orally which could relieve me of the hours spent cooking, blending, calculating nutrients, learning consistencies and administering feeds through a tube every week. It would allow him to socialise better at nursery with his peers. It would enable him to explore further when travelling. It would reduce the time he has to spend sat in a specialist chair during his feeds which is currently around 6 hours a day. It would allow him to control what he eats, when he eats and how much he eats which has the potential to reduce or even remove his vomiting which may be caused by essentially force feeding him through his tube. It would remove our current need for carers which keeping the funding is constantly on a tightrope and the cause of a lot of stress and low moods throughout 2019. It would enable family and friends to spend time with Jaxon alone without fear of his feeding tube complexities and training required.
I’m sure theres more but I’m cautious to not obsess over what could be, which is life-changing, because it may not work but we’re here for the process and we will give it all we’ve got. I’ve been pondering this programme for a long time, full of worries, concerns, ‘what ifs’ and a year later we still have the same problems. I had always hope I could put weight on him in preparation of him losing some in the process, but if I’ve come to the conclusion that if I wait for him to be a healthy weight, I may be waiting forever so instead I’m going on the fact he is well, he is out of hospital, he has thrived in every other area and essentially, its now or never!
If you’ve stayed with me until now, well done, this wasn’t a short read. I’m not sure I got across everything I wanted to, if you have any questions please feel free to comment beneath the blog and I will do my best to answer. I would like to take this opportunity to thank you for reading and supporting our unique journey. Please share the blog post, you never know who it may help in your friends list. A similar post I would recommend is ‘The Pros and Cons of tube feeding‘.