Tube Weaning: Day One

I’m pleasantly surprised, though hesitant to get excited naturally.

Mid morning I received a message from the feeding school with a suggested new regime to start the process. I looked it over and noticed lunch and dinner reduced with a short amount of dinner and the same for his overnight feeds. It wasn’t what I expected, it was drastic but softly drastic. I knew it wasn’t going to instantly starve him but I thought when cutting down it would be removing for example breakfast and working on his hunger in that time. Instead I was to reduce breakfast and lunch by half, dinner by a little and overnight feeds too.

It was a relief to read in the message the paediatrician asking me what I thought, if I was happy to go forward with the suggestion and also if there were any restrictions in reductions from his home paediatricians. I was glad she asked as although I was about to respond informing them that Jaxon needed a minimum of 1500mls of fluid a day for his kidney function, the fact she had noticed his large water input and questioned it made me feel at ease that it was not confrontational or them vs us and instead understanding and care that would involve myself, his regular professionals and the feeding school team equally.

I responded explaining his fluid requirements for his kidney function and she explained that the reduction left him with around 1100mls so we would be aiming for Jaxon to orally take the 400mls to make it up. I hadn’t thought of this in my panic. I had in my head that he needed his 1500mls regardless of what we were planning for his feeds. However, I was curious. Jaxon has been known to drink water. Not very well or with great technique and only when clinically dehydrated but its a spark of hope right? With a target it felt possible.

Jaxons lunch normally takes from 12pm-1pm so given the suggestion of a half feed I assumed I should give him the half feed at the last half of his feed time so the first part I could offer him the opportunity to try foods orally. In the past this has led to anger and upset with food thrown, screams to tell me he has no interest and visible frustration at the suggestion. The past few months Jaxon seems to have developed past this stage and has been less aggressive with reduced casting behaviour. Today I gave him a bowl on his table with small pieces of buttered crackerbread, bacon, a cheese flavoured crisp, scrambled egg and two pieces of pasta. Whilst he did not swallow any he blew me over as he tasted, licked and explored every item with his hands and tongue. He has always been cautious of food, almost defensive against it but today he was interested. I could see him looking at the choices, inspecting them and bringing them to his mouth with his tongue stuck out to lick them.

The thing I can’t do with Jaxon is offer him food. I can’t put food on a fork or spoon and hold it to his mouth. If I do, he bats the utensil away. He point blank refuses. He will grab the fork out of my hand and throw the utensil and food to the floor. If I approach his mouth with a spoon of liquid he will shake his head, cover clamp his mouth closed, put his hands over his mouth and when strike out. Jaxon has to be in control. So at this point, all I can do is put food infront of him and hope for the best.

I’m curious as to how the nights will go with him on reduced feeds. Will he wake hungry? Will he sleep through as he still has the sensation and the sound of the pump? He should have less nappies with less input which would be great with the threat of carers being removed but our experience of reduced nappies is a low urine output due to dehydration. Will he meet his needs on his own?

So many questions. So much hope.

I’ll keep you updated.

5 thoughts on “Tube Weaning: Day One

  1. Christine Gregory

    I think it sounds so good to have a professional who cares and is monitoring with you. It’s vey early days and it all seems to have positive steps and they will be steps not leaps I guess. I’m no professional though believe if he wakes hungry that might make it want to swallow the food as he seems to have the fluid intake sorted by this doctor ( is that what he/she is). I think you’re very brave to do this and I’m routing for you all, meaning Jaxon and Nathan too. Xxx


  2. Melissa Seear

    Thank you for sharing this, I’m so hoping it goes well and love following his progress. I appreciate the time it must take you to blog so THANK YOU! Xx


    1. Oh thank you! I actually feel a release blogging so it’s quite selfish of me really! I don’t proof read or anything, no professional over here ahah thank you for caring to read ❤️❤️❤️


  3. Helen McCann

    Been following you for a while , and think about you a lot. I’m a Mum too.
    (No extra needs here) I really respect you. You are an utterly amazing Mum committed to Jaxon having the best life
    he can. I can only imagine the immense
    pressure you feel.
    I wish you both so very well & thank you for using social media to highlight what you are going through, & blogging too. Just keep reaching out & doing what you are doing. (Just brush any idiots aside with their negative comments) any decent human can only see you are a Mum who loves her boy. Xx


  4. I’m so excited to keep up on this journey with you guys, after following you guys for over a year I really feel connected with you as a family. It’s like seeing a friend online going through things and I want to support. I think you’re doing such a great job Kaytee, you’re sharing your story and really speaking out on the behalf of SEN parents and carers. I work with children with additional needs and also with their parents, and I see the struggles everyday and not many people know about it. So you sharing your story, the good and the bad, really helps people more than you know. Looking back at the last year you’ve both come on so well and it’s so great to see, I wish you all the best with this journey and I pray that this works out for you both so you can both have the quality of life you deserve. Much love and a happy new year to you!
    Alex x

    Liked by 1 person

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