Carolyn Voisey's avatar

by Carolyn Voisey

And I don’t mean houses here, I mean ME. It’s been a week now since our world turned upside down (again) and Sam was moved over to tube feeding. I’m astonished at how quickly we’ve all fallen into a new routine and adapted; Sam knows when his feeds are due (every 3 hours) and will let us know very swiftly if we’re running late (!), the pump and its stand have a home in the corner of our kitchen by the microwave and frankly it feels like it’s always been there now. The cats are used to the tubing that runs from Sam’s ng tube to the pump and after some initial interest in it are completely bored by it and leave it alone (much to dear husbands relief).

And we’re seeing a difference in Sam too. He feels more solid, stronger. His face is starting to fill out again, and you can no longer see each and every rib when dressing him. It hasn’t been plain sailing all the way - the formula Sam has given him horrible reflux, seems to cause massive mucus production (translated: snot. Everywhere) and he is now getting through nappies like they’re going out of fashion. We thought the days of hideous liquid nappies were a thing of the past..... oh, how wrong we were! 

On the advice of fellow tubie mummies, we have invested in a large plastic bin with a lid, that lives in the downstairs loo and if filled daily with hot water and hand washing laundry powder! Nappies are simply not designed to contain the kind of volume of poo that an almost 4hr old on a liquid diet will produce! The Swan community (Syndromes Without A Name) have coined this a Poonami, or as it is known in our household... Poomageddon.

And it is an apt term my friends. Oh yes.

So, there are pros and cons to this tube feeding malarkey. From chatting with other SN mums (what on earth did we do before Facebook/social media came along?), many are moving away from formula feeding and going over to a blended diet - quite simply, real food pulverised to a thin consistency that can pass down a feeding tube. You’d think dieticians would be cheering this move, after all prior to commercially available formula this was the only way of getting nutrition into a tube fed individual... however, although Sam’s dietician didn’t say no to it, she wasn’t exactly enthusiastic either.

Sadly, old ways persist in the medical world, and it takes a long time to change attitudes - I’ve already started reading as much as I can find on the blended diet, looking into recipes that other families use, and starting to plan nutritionally complete meals for Sam. 

Some of the arguments against the BD are just silly - on being told it isn’t safe because the food isn’t sterilised, I pointed out that I don’t know a single person who sterilises their children’s food when they eat orally! But there are some good reasons to be wary, or at least sensible about it - pips can and do get stuck in the tubes which while not the end of the world, can be a problem. 

Once again the Facebook community has heard the call of another SN parent lost in the wilderness and have rallied with incredibly helpful information, recipes, suggestions and ideas. Many commented on the vast improvements in their child’s well being, general health and (a subject close to the hearts of parents, everywhere) how bowel movements improved massively once formula was replaced with a BD.

One book in particular was recommended by multiple people over the past few days, it was swiftly bought up on Amazon and read pretty much cover to cover… the book in question, “Complete Tubefeeding: Everything you need to know about tube feeding, tube nutrition, and blended diets” by Eric Aadhaar O'Gorman, was a Godsend.  

The author, himself a tubie, presents all the information you could hope to find, in a clear, concise and non-biased manner. He outlines the pros and cons of formula, blended diets, etc., and ultimately leaves the reader with all the information needed to make an informed decision. J and I are in full agreement; as soon as possible, Sam will move over to a blended diet.

Our dietitian may not be 100% comfortable with it but I’ve already started meal planning to ensure that Sam gets a fully balanced diet and the correct number of calories, this will be presented to the dietitian at our next meeting for discussion so we can get a good range of recipes devised that fully meet Sam’s needs.

So, as of today I am off to research industrial-strength blenders… Sam is gaining weight brilliantly on the formula but after yet another nappy of biblical proportions this morning, going onto a BD can’t come soon enough...

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