Tube Weaning: Week Two

Day 8

Starting to feel like he’s never going to eat! I reason with myself ‘Isn’t this what babies do when they first wean? Don’t they spit it out too? Doesn’t it just take time to get them swallowing?’ The difference of course, that babies had already been swallowing milk and would still get their calories from milk regardless unlike Jaxon who still needed his tube feed whilst he wasn’t swallowing. I try to remember the initial excitement and promise of him touching and exploring foods that the first few days brought but I worried it was never going to go any further.

On a more positive note, I withheld Jaxons daytime fluids and he drank 500mls! Huge record. In 8 days he has gone from drinking 0 to half a litre! Incredible. So I focus on what this means instead. This means we could go out without his feeding pump in the day. It means the remaining 1000mls could be given overnight.

Now I just wish he’d let me put other flavours in a bottle to drink some calories! I already tried yoghurt, milk and chocolate milk (when he liked chocolate cake!) but each one ended up making him pull a face and then refuse water for the another hour and drink less water as if he didn’t trust the bottle anymore so I’m going to add honey in subtly and see if he still dislikes it.

The feeding school sent another reduction in his plan yesterday so I decide I’ll start that tomorrow as his weight appears stable for now.

Food orally consumed: Unknown. Tastes.
Fluids orally consumed: 500mls!
Weight: 9kg

Day 9

He’s not so keen on his water this morning. Sh*t.

By lunch he’s had 250mls, okay, another 250ml to go.

The feeding school are amazed with his oral intake yesterday. I advise I held back his daily fluids and they’ve encouraged me to continue to give his water overnight only if possible whilst he’s drinking so well. They want to reduce his overall intake below that which I advised his nephrologist requires so they’ve asked me to see if there’s any flexibility. We have an appointment with him on Tuesday so I’m looking forward to filling him in on the feeding programme and Jaxons intake to hear his response.

Food orally consumed: Unknown. Tastes.
Fluids orally consumed: 500mls!
Weight: 9kg

Day 10

I’m tired. Though Jaxons water intake is amazing it’s overcast by the main issue being his weight and him not eating. I’ve noticed him going to sleep is getting later each night and not napping during the day, both of which I presume is due to hunger as him getting his sleep has never been an issue before. Of course this is affecting his mood during the day too. He’s whiny and ratty, though he is a two year old so?

It’s just frustrating. The benefits that come from him eating such as less tube time, less preparation and overall more time every day are worth nothing if he doesn’t eat. His weight is maintaining but I have no idea how.

I. just.want.him.to.eat.

We’re both feeling the frustration. He’s hungry and irritable, I’m frustrated knowing he’s hungry and watching him lick and chew food but then spit it out and not grasp the idea that swallowing will not kill him – quite the opposite!

Fluids orally consumed: 750mls?
Food orally consumed: Breakfast completely refused. Chips and pretzels chews and spat out.
Weight: 9.0kg

Day 11

His water intake is doing REALLY well. He’s on about 750mls a day orally now which is more than he had in the day via tube before the programme! It’s Tuesday so we had our appointment with the nephrologist. He was pleased to hear about his intake and highlighted that this means we can give him what he needs according to his actual needs rather than guesstimating and I guess that is reflected in the fact he’s now drinking more in the day than we had him on, was he thirsty all along? I wanted to check with the doctor that not having him on fluids from midnight was okay because he wakes up veeery thirsty and I was worried it might have an impact on his kidneys. The doctor asked if he wakes in the night at all to which I said no as he’s currently not sleeping until 10/11pm and then awake at 7pm which is a lot less than his usual 12 hours so I think once he’s gone, he’s gone. The doctor explained that a lot of Barrters patients wake up in the night from thirst so this would be something to bare in mind but whilst he’s sleeping that’s fine. It’s these little insights that are really helpful to understanding. We didn’t get to do his bloods as there was a 2 hour wait and I hadn’t brought his puree for his tube feed so we rebooked for another day.

We returned to his carer who turns up every shift with new foods for him to try (honestly, what a sweetie!). She asked about his tube feeds and I said no water in the day which shocked her, I hadn’t realised how much had changed since we saw her just a few days ago. Sometimes this is what it takes to realise you’ve missed a whole milestone – Jaxon is no longer requiring tube fluids during the day. WOW. We have got somewhere. Jaxon DRINKS.

Fluids orally consumed: Unknown
Food orally consumed: Bacon licked to death. Fries chewed and spat out.
Weight: 9.1kg

Day 12

I think the 8.7kg weigh in today tarnished my excitement at the programme and Jaxons progress. He’s doing SO well, every day he amazes me BUT without swallowing he cannot maintain life. Simple as. Whilst he only plays with food he’s not meeting his basic human needs and nutritional values. It’s hard. It’s frustrating. Admitting that doesn’t mean I’m not crazy proud of how far he’s come and recognise how well he’s doing but is simply reality. Fear and reality.

He drank an amazing amount this morning of one full 250ml bottle and then another but it’s getting difficult to manage and track as he wants to do it himself and when he does, he squeezes to hard and the water just gushes straight back out of his mouth. The joys of independance and the irony of that being exactly what as a parent I strive for, for him!

Fluids orally consumed: approx 500-750mls??
Food orally consumed: Unknown. Crackerbread, cheese, bacon. Fish fingers, chips and bbq sauce.
Weight: 8.5kg

Day 13

Jaxons first day at preschool on the feeding programme. God I was so disorganised. We had lots of difficulty getting mealtimes adjusted at preschool as it was scary for them (tube feeding) and they experienced the soul destroying vomiting. So first week back after christmas and I turn up with a lunchbox (wow), a water bottle and telling them to only give 50mls of puree via his tube (it was 150mls). They took it great and were super co operative despite chocolate cake being a main part of his lunch!

When I collected him he’d only drank 100mls of water. They’d kept it by him all day and offered but he kept saying no. I was too concerned, he would have been hugely distracted and it’s only 100-150mls down. Thats what I thought until he barely drank at dinner either. Please don’t stop drinking. We literally just hit a huge milestone of no tube waters in the day, let’s not go back already!

He accidentally swallowed some breadcrumbs off a fishfinger. It was quite large so he choked. I told him it was okay and said well done afterwards try and give some negative reinforcement to swallowing. All he’s ever known is food coming up his throat, not going down, it must be so odd to him.

Fluids orally consumed: approx 500-750mls??
Food orally consumed: Unknown. Crackerbread, cheese, bacon. Fish fingers, chips and bbq sauce.
Weight: 8.7kg

Day 14

I’m pretty sure he SWALLOWED some bacon this morning. He loves the stuff. I’ve noticed that when he’s distracted by the tablet (advised by the feeding school) if it’s a small amount (like, minute!)he can get carried away chewing at it and then it just disappears! He has great oral skills so he can put food in with one hand and take it out with the other or put food in, manoeuvre it around and then gently push it out with his tongue to put something else in (SO FRUSTRATING) but it seems whilst distracted there’s hope of accidental swallows. And there’s no choking. I mean, I’m talking about a pea size amount, possible smaller, the size of a grain of basmati rice. But it’s something?!

We’re even lower on the weight and the oral intake today. 8.5kg and only 490mls of water. I need him to eat.

I ordered mindful chef for myself (a health recipe box that deliver meals to cook for one, that’s a referral link if you want to try it) and tonights meal is barbeque jackfruit, brown rice and avocado salad. The feeding school had asked me to try putting spreads on food items he likes to get some calories in due to his licks but lack of swallows but I was worried about ruining his safe foods. Jaxon doesn’t tend to like ‘wet’ items of food and the thought of putting it on a food he actually entertains and putting him off it worried me. I sat at the table with him tonight and gave him some of my dinner to try expecting he wouldn’t touchy the saucy bbq chicken. It was a hit! He even licked the sauce of the onion! I’m also pretty certain I saw one or two grains of

Another thing to mention is sleeping. Jaxon was awake from 4.15-6.15am and needed waking at 7.30am. I suspect what the nephrologist said is the case, him waking due to thirst. Or hunger. But it’s not good for his daily activities or his feeding. Being woken up he’s in a foul mood and who wants to eat immediately after being woken up whilst still tired?

Tonight I’m putting him on a small amount of water from midnight in hopes the trickle of a substance keeps him asleep. Earlier in the week he wasn’t sleeping (I suspect due to hunger) until 10-11pm and didn’t want to be woken up and now he’s sleeping around 7/8pm (his normal time) but waking early hours in the morning. What a rollrcoaster.

Fluids orally consumed: 490mls
Food orally consumed: Possible rice, cake and bbq jackfruit swallows.
Weight: 8.5kg

*SIGHS*

So last week was the first week and he showed great interest in licking foods. This week he drank 750mls a day on some days! This has lowered but even 500mls is an achievement from nothing. Oh and I discovered he is definitely my child as he face plants chocolate cake daily and can actually say “chocolate!”. Finally, the end of the week has seen a couple of teeny weeny, zero calorie intake swallows but it’s huge progress. He is doing SO well and I am so so proud of him despite still washing as many clothes as I did when he was vomiting (whaaat!haha) and having to sweep and mop my floor 3x a day! However, he has gone down to 8.5kg which is a huge drop and evidence of his low intake. Next week we need more swallows. PLEASE JAXON!

@thenursemum

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