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Routine, routine, routine

Having come out of hospital with a routine, we fell out of it quite quickly once we had to juggle our pre-schooler with our tubie baby. Big mistake!  

With multiple medications, and 2 or 3 hourly feeds, routines are so important. We have gone back to a strict routine, which takes the guesswork out of each day.  

Both kids have reacted well to a stronger routine, and it makes planning so much easier.

Learn what taping works for your child

Rosie hates having her tube changed.  

As in screaming fit, stopping breathing, gagging and pushing it back out, hate.  Recently she’s also had nose bleeds with tube changes as well.

So we do everything possible to stop the tube coming out in the first place. 

Rosie’s skin has become more and more sensitive to different tapes. We’ve perfected a taping method that works for her, which allows us to change the part closest to her nose daily, leaving the rest intact.  It’s not pretty, but it’s a lot better than a tube change!

The system works for us is: cavilon barrier cream underneath, duoderm extra thin, two strips of hypafix over the top, and one at the back of the neck. Plus a fun tape for special days.

The other part of our essential kit is apeel, as it allows us to remove the tape without causing pain or bleeding.

Have a sterilising station

Some people are very lucky and have fresh syringes to use for each feed.  Not us, we have to reuse ours until the numbers come off or they become super sticky.  This means washing and sterilising multiple times a day.

We have 250ml bottles, 100ml bottles, 60ml, 20ml, 5ml and 3ml syringes that all need washing and sterilising.  

Our go-to cold-water steriliser is Milton tablets. A game changer for us was this drying rack, by Munchkin.

This article contains affiliate link, at no cost to you. It helps to keep me in chocolate and gin, and RoRo in cute clothes.

Organise storage

You’ll find that with tube feeding comes lots and lots of supplies.  We keep it simple, a kitchen cupboard shelf lined with small storage baskets, so I can grab supplies quickly, and see at a glance what’s needed.  Larger items, such as milk tins and boxes of giving sets are stored under the stairs.  Other families find units such as Ikea’s Kallax and Trofast useful.

Plan the supplies

I have had to become super organised since having a tubie baby!

I have worked out exactly how much of each supply my daughter uses in a month, then I mark in my calendar when the supplies arrive and the phonecall which comes a week before.

I also set a reminder for prescription renewals. It’s really easy to have an excess or shortage of supplies, so this method ensures I keep on top of them. 

Plan ahead

Initially I found it really daunting to go out with a tubie baby, the amount of organisation, extra kit, cleanliness of where we were going.  I now have a standard kit for going out, that includes testing strip, spare tape, anti-bac wipes, anti-bac gels, mini anti-bac spray, sterile 5ml syringes, spare giving set.  Each night, I can then add a bottle of cool boiled water, milk, bottles and syringes.  I can now head out for the day without much extra thought than is needed for a non-tubie kiddie.

Befriend your local nurses

Rosie’s community nurses are wonderful, they come and change Rosie’s tubes without complaint, whether it’s the first time in a month or the third visit in a week.

They’re full of useful tricks, plus they supply us with half the kit we need! Ours only work regular hours, so out of hours we go to our local children’s ward (Rosie has open access).

Since Rosie is expert at pulling out her tube at weekends and evenings, we see a lot of them!

…and pharmacy

Our local pharmacy are fabulous, and they now know us by sight.  They call us when the prescriptions are in, they follow up with the doctors directly if they sent the wrong script through, and they know Rosie so well, that they are often better at confirming what is right for Rosie than the doctors.

Embrace the positives

Sure, having a tube-fed child has it’s negatives, but there are definitely some positives…. It’s easy to get medication in, we can keep her hydrated and avoid hospitalisation with bronchiolitis as long as she doesn’t need oxygen, we never had to worry about winding her as a baby, and most importantly, our daughter puts on weight and has fluids which she wouldn’t manage otherwise.

 

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