Tube Weaning: Week Three

The week of learning…

Day 15

He actually blood requested a brownie for breakfast. False hope as he then refused lunch and dinner.

Food orally consumed: unknown
Fluids orally consumed: 500mls
Weight: 8.6kg

Day 16

Last night worked a treat. I put him on his milk an hour early which mean that intervention by me stopped at 11pm – a record! At which point I left him on just 30mls an hour of water to try and get him through without waking up thirsty but still leaving him wanting more when he woke. I timed it to stop at 6am in hopes this would lead him to wake at 7am. It worked. The only problem was his urine output. When I checked at 11pm after he had over 400mls of fluid his nappy was dry. When he woke this morning he was crying as the whole bed was soaked.

Food orally consumed: unknown
Fluids orally consumed: 500mls
Weight: 8.5kg

Day 17

I feel good today. Jaxons water feed finished at 6am, he woke at 7am in a good well rested mood and thirsty. He definitely ate some bacon. I think cutting things into swallowable size pieces helps. He has great fine motor skills so he’s got this. No longer interested in crackerbread but we’re guzzling water so happy days.

Jaxon fell asleep at 12pm which would normally be problematic. His old plan he would have to be sat upright in his chair from 11am-1pm to have his water and lunch tube fed slowly. On this plan he’s asleep and it’s fine. He’s drinking water himself so he’s in control of that and his tube feed is one third of his old amount at 50mls which will only take 20minutes. He can taste some foods when he wakes up. I fancy taking him for a walk and the fact he doesn’t wake until 1.30pm isn’t an issue at all. Normally this would cause concern as his lunch tube feed would then take us until 3pm and his dinner tube water and feed were 4-6pm (literally that whole 2 hour slot) so I’d be anxious about the fact he would more than likely vomit dinner as it was too close and I couldn’t push it back later as that would have a ripple effect onto his night time feeding plan. Today I had non of these worries. I took him for a walk. I put his splints on and we did physio in the park and then I got a coffee at the cafe and bought a red velvet cake which he enjoys a couple of swallows of! Incredible.

We got home around 5pm and he sat in his chair for dinner. He had no interest in the chicken nuggets or potatoes which was a tad deflating but I’d just picked up some brownie bites from the co op. I cut it into tiny pieces that could be swallowed without biting and there were about 5 crumbs left. YES JAXON!

Bath and bed were as smooth as they used to be.

Food orally consumed: one brownie piece
Fluids orally consumed: 400mls
Weight: 8.5kg

Day 18

I woke up at 7am and took a moment to wake up. Then I thought, his pump isn’t alarming? I went in and it was still running so I must have miscalculated. Jaxon was looking up at me with newly woken fuzzy eyes and a bed head.

He refused to even touch breakfast and barely drank either. As his water pump had overrun I imagine the thirst hadn’t built, I must make sure it ends at 6am to give him an hour before the day starts. For breakfast I gave him crackerbread and bacon. It’s been a few days since he entertained crackerbread even though that was his go-to at the start. No doubt it’s because I tried to give him it with peanut butter on (for calories) and chocolate spread. He no longer trusts it. He’s gone off it. Shit. I’ve got to be so careful. I need to not mess with his safe foods no matter how tempting it is to try and sneak in more calories. I like my bacon crispy and that’s how he’s been enjoying it but I thought it may be a little harsh on his throat so I took care to not overcook it – maybe that’s why he won’t touch it, maybe he likes it crispy tooz damn.

Lunch went untouched. He’s tired. In a really bad mood today. Growling at everyone. He’s also really snotty. I’m glad to see him napping again back to his old routine before this feeding programme but I worry that he’s lethargic from a lack of intake.

It feels like every food item that I jumped up and down about him liking is slowly going out the window. He used to like crackerbread, no longer touches it. He used to like fish fingers, no longer touches it. He used to like chips, won’t touch them. What is going on?! Even more frustrating is the “used to like” refers to a few days!

His carer sent me a video of him eating the brownie she tried to make him bake with her (he refused – great mood remember). Ah thank god he’s eating! So now I feel like I’m weighing up being tube fed vs potential risk of type 2 diabetes, it’s always one thing or another. *googles brownie recipes that taste like chocolate, are high in calories but are healthy*. I’ve found one by myfussyeater, oh perfect I follow her on Instagram, they’re breakfast muffins. Now baking muffins is on my to do list, good job I’m parked outside Sainsbury’s.

Food orally consumed: barely anything
Fluids orally consumed: 500mls
Weight: 8.7kg

Day 19

Busy day today with an appointment 9am-10am and 10am-12am. It meant we didn’t get much time for breakfast and lunch was late both meals he rejected.

We attended his conductive education class 10-12 and normally he wouldn’t really entertain the short time they practise mirror mealtimes. When we first went he didn’t touch anything. The session before Christmas they introduced me to the teddy bear beaker which astounded me when he took some sips of water and today he said “YEAH” when offered foods. However, the options of yoghurt, biscuits and crisps though great choices, where not enough to get his interest – so I had to pull a brownie out of my bag 🙈. Yep, I did it. It now carry brownies in my bag. WHATEVER IT TAKES. It worked. He even stuck his tongue out to himself in the mirror to see the cake on it – brilliant!

Tried him with mash potatoe for dinner and he’s not a fan. However fish, cous cous and the good old brownie got a few small swallows.

Food orally consumed: possible swallows of cous cous, fish and brownie
Fluids orally consumed: 500mls
Weight: 8.7kg!

Day 20

Its a nursery day so not much to tell except they told me they do snack times and said they could do that with him too if I wanted to bring something else in for him for them. I was happy to hear more feeding input could be provided and made a mental note.

On another note, Jaxons carer told me last night she thought he would have picked it up quicker. It stung a little but I knew what she meant because I had thought the same. However, I’d learnt on this journey that whilst I knew it wouldn’t be a magic wand, it is far more complex than hunger = eating. Personally, I had thought that being a smart cookie as soon as he learnt TO swallow, he would continue to. I thought there was a huge barrier between him understanding food and hunger but that once he mastered swallowing, he would just get it. Like something would click. Instead, it seems he has grown hunger, his brain has done a fabulous job at telling him to put the food to his mouth and his senses have clearly responded but the accidental swallows so far haven’t been enough to connect hunger and food because one swallow doesn’t settled hunger. Not only that but developmentally he is jumping a tonne of steps that the typical weaning process takes. Typically a baby would drink milk based on hunger, then maybe milk with rusk, then thin purees, soft foods, and eventually end up exploring all textures as their oral skills and personal interest develops. Jaxon however, is something else. He won’t drink anything other than water. He has never fed based on hunger and for two years never felt hunger as he was fed around the clock so now that feeling must be a very odd, unfamiliar thing to experience – there’s no link to it. He won’t touch purees or anything wet or cold and wet because (assuming here) it’s too much like the feel and texture of vomit which has traumatised every day of his life until recently. He’s 2.5 so he wants to be independant and won’t let me feed him. He has an oral aversion so he has to be in full control. The foods he seems to enjoy are foods such as bacon and crackerbread which require biting, chewing and many skills that typical child learn over time after practising with softer and safer textures.

He’s doing bloody well to be responding to hunger with tastes, to be exploring foods despite his oral aversion and to have learnt to drink water even though for two years nothing went down his throat. I’m proud of you kid and I’m learning. I was naive and I wasn’t aware of all of the challenges you face because I’ve never experienced them, but I’m learning.

Food orally consumed: unknown
Fluids orally consumed: 250mls (bad day!)
Weight:8.5kg

Day 21

Today was a busy day and another nursery day. On nursery days breakfast gets rushed and lunch I feel completely in the dark on so today I took him in a 9.30am as I didn’t want to stop him eating until he was ready. The reason being he often takes an hour after waking up to show any interest and at least half an hour at his table before he started putting it in his mouth. I took snacks as they suggested – just some mini cheddars and hula hoops.He had drank 250mls before we left the house so I felt a little better knowing he doesn’t drink as much whilst being a busy little boy at preschool.

When I picked him up I was SO hungry I couldn’t wait to eat and hit Mcdonalds drive thru (sue me). I smiled with a full heart as I watched him through my mirror give himself. So amazing. I picked him a chicken nugget happy meal knowing he’s lost interest in fish fingers and myself a cheese burger. This kid was HUNGRY. We weren’t even at the first window to pay and he was screaming at me “ok, we’re going to get some chip, two minutes!” I said, “YEAH YEAH YEAH” he responded which was basically him saying GIVE ME NOW. He munched chips on the drive home. When we got home he wasn’t impressed with the chicken nuggets, they went untouched. HOWEVER, I crumbled up some of my beef burger and he kept coming back for more! He was having trouble swallowing it, it kept coming back out but he most definitely wanted it!

I had a call from the renal dietician at the hospital asking how he had got on with the fortini milkshakes, I explained no luck. She asked about the polycal added to his water for calories and I told her I added 2 scoops to 250mls and he still rejected it. She asked about the feeding programme and I updated her. She expressed concern about his weight and said that he didn’t have the weight to lose. Of course, you guys know that I am very aware of that. I then received an email of his community dietician expressing her concerns about his weight. The thing that gets me about this is that no one had any answers to his weight problems. Nothing worked. He has always been underweight and up and down. I’m doing something extreme, yes. Do I like the process, no. Do I feel like theres other options? Also no. Am I doing it alone based on no knowledge? No. Am I paying privately for a team of qualified professionals with more experience and success rates than anyone else involved in his care? Yes. I am under enough stress bending over backwards to do the best for my child, with nothing but his best interests in mind, I do not need other people questioning me or guilt tripping me when they didn’t help before it got to this point. However, we discussed the polycal (adds calories to water) and she said I could put it in his tube feeds so we agreed it would be a good idea to add it to his water overnight and I was more than happy to think he would get a little something somehow.

His ribs made my heart drop at bath time.

Food orally consumed: crumbs of beef and licks of salty fries.
Fluids orally consumed: 500mls
Weight: 8.6kg

@thenursemum

10 thoughts on “Tube Weaning: Week Three

  1. I am so happy that you’re documenting this journey for a few reasons: I’m happy we get to learn along with you, I’m happy you’re bringing more awareness to this side of parenthood, I’m happy you’re finding a way to express your emotions and I’m happy that you’ve got something to look back on to see how far you’re coming. You guys have overcome so much that there is no doubt you’re gonna over come this bump in the road, the progress your little follow has undertaken in the past few months is so incredible and its down to the strength and determination of you and him. This will work for you Kaytee, and you will overcome this. I hope adding the calorie powder to the water overnight will help with his weight so you can continue the feeding programme effectively and guilt free. Sending love!

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  2. Lucy

    Hi Kaytee, great to hear the updates and even though it’s slow it’s so far from when he used to kick off if you even came near him with food!

    Just one thing, I noticed you mentioned weighing up the benefits of tube fed vs diabetes. I appreciate you may have been joking but as someone with diabetes I find that quite offensive. Also we shouldn’t really be using diabetes in such a general way, for example type one diabetes is an autoimmune disease and has not been caused by poor diet or anything of the sort.

    I know you’ve got your nursing background and you like to educate people so you probably already know this, but it’s always worth a reminder as comments like this can really cause stigma around a disease that was no fault of the patient’s own.

    I hope this doesn’t come across horrible in any way, just wanted to share how it made me feel.

    Sending all my prayers to you and Jaxon x

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    1. Hi Lucy,

      Firstly thank you for taking the time to read the blog and keep up with our journey.

      Secondly and more importantly, I am so sorry to have caused you offense, I assure you it was not my intention and I thank you for bringing this to my attention.

      I would like to clarify, it was not intended to be a joke. As you have pointed out there are different types of diabetes and it is type 2 I was referring to – caused by poor diet which Jaxon currently has. It was my error to not specify that.

      It is our reality to weigh up one implication against another, neither of which are ideal.

      I would never wish to encourage stigma. Diabetes can be an autoimmune disease which is manageable and not to be joked about.

      I have edited the post to try and remove any humour and clarify Type 2 diabetes. I hope this helps? Let me know x

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      1. Debra

        Acknowledging that type 1 DM is autoimmune but still implying type 2 is someone’s fault (‘poor diet’) isn’t any better though. Type 2 can and does have a genetic link, my Dad was diagnosed despite his healthy diet and active lifestyle. Yes obesity can be associated with higher rates of type 2 but not all those with type 2 are obese or have brought it on themselves.

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      2. I apologise you have taken offence. You are totally right and I should have clarified in my last comment that type 2 is ‘often’ caused by poor diet rather than generically caused by. I was incorrect.

        However, my point still stands that it is a genuine concern, not a joke. I was going to remove the comment from the post but to do that would be to ignore a valid risk and miss out a concern that has come from tube weaning. I’m not referring to anybody else in this post except Jaxon and his health and wellbeing.

        It is a shame that is what the comments have centred around rather than Jaxons eating.

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  3. Kellie

    I only started following you a few months ago and always look forward to catching up on Jaxon’s progress. What an absolute legend your little man is! He’s come so far and he is incredibly lucky to have you in his corner as you are him! You guys have got this💪🏻

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