*Cute dog photobombing buckets is not the focus of this piece but who doesn’t love a dog right?
It has been feeding tube awareness week this week and as it draws to a close, it seems fitting to share a post I started back in November last year but never got around to finishing!!
Day to day life, the old ‘time-versus-needs-musts’ conundrum – sometimes I think back on that maths formula: time versus speed = distance… or some such thing – (see Dad my education wasn’t entirely wasted!) – got in the way of me actually finishing the post so it has sat in my drafts folder unpublished & unloved-(ish)
It doesn’t normally take me that long to write a post I hasten to add (although sometimes it feels like it 🙄) & when I started it, the angle I was coming from was slightly different to how this is *hopefully* going to turn out.
Anyway, to get to the nitty gritty, I have TWO tube fed children. When I look at that written down in black and white, it feels odd to reflect on, but the day to day reality of it doesn’t phase us a bit.
Don’t get me wrong – if you had told me 10 years ago when the dietician first brought up the subject of tube-feeding the Minx because her weight had dropped so far that she wasn’t even on the growth chart centiles any more, never mind a curve, that I would ever reach the stage of it being our ‘normal’ I would have laughed in your face (whilst possibly having to restrain myself from punching you!)
But with familiarity doesn’t always come contempt, more happily it also brings acceptance and if I could share one pearl of wisdom with parents the world over, especially those first timers agonising and/or struggling over bottle versus breast, when it comes down to it, FED really is best.
I’d love to claim that last pithy line as my own but I’d be lying. It’s a slogan that has been widely promoted by campaigners for both breastfeeding and bottle feeding and latterly to include ALL forms of nutrition which can only be a good thing. ❣️
It is a common myth that those who are tube fed do not or cannot eat anything orally at all. However both my children enjoy food but for a variety of reasons do not receive adequate calorie intake and/or fluids via mouth alone. During the day they will eat in the usual fashion and then overnight they are fed via their feeding tubes.
Minx also receives all fluid and medications via her tube during the day so tube feeding really is a life-line for us.
Before I continue with the original blog post I’d intended to publish, I should point out that generally, day to day management of tube feeding is surprisingly easy. It is only because my kiddos are greedy and think I have nothing better to do than run around after them both, having palpitations and ageing myself in the process that there is so much “excitement” in our lives!
Tube feeding boils down to making sure we have the correct equipment and feeds in stock at home and liaising with supply companies for home delivery on a monthly basis.
I’ve *slightly* glossed over the basic fact that obviously to be tube fed in the first place you need some kind of temporary or permanent feeding device in situ but I’m hoping that this can be taken as read. 😊
You need feed, water, syringes, and an extension set to connect between feed and the person receiving the feed.
How the feed is ultimately delivered depends on whether you are doing a bolus feed: an empty 60ml syringe connected to an extension set, then attached to the ‘tubie’ & milk poured into the syringe, slowly dripped in via gravity.
Via a feeding pump on which you set the total amount of feed & then the hourly rate in millilitres that you want delivered. Press your start function and off you go.
In either method you finish the feed by flushing the extension set with a small amount of water, delivered via another syringe, to ensure you don’t block your feeding device.
There are numerous different types of feed, all carefully formulated to ensure optimum nutritional benefits and whilst not tailor made to the individual (unlike TPN which you can learn more about here ) they are designed to meet multiple dietary needs and calorific requirements. A specialist dietician works with you and your child to prescribe and then monitor their feeding progress.
A growing number of caregivers are championing blended diet which means that ‘real food’ – a meal- is carefully blended to a smooth consistency and gently syringed into the tubee: https://www.bda.uk.com/resource/the-use-of-blended-diet-with-enteral-feeding-tubes.html
I haven’t thus far been brave enough to try and have to confess that given the running around like a loon that seems to entail looking after my family
and other animals it’s just another thing to add to the mania. It’s not quite as simple as liquidising a Maccie D’s whatever you are cooking and adding liquid to thin so for us, using the feeds already made up to deliver nutritional support is currently best for my children.
Anyway, back to where the original blog post was going….
When I think about action packed, fast-paced and dynamic adventure, I’m thinking more along the lines of the latest James Bond film rather than the humdrum but relentlessness of my usual every day life.
I quite like all things mundane if truth be known and as I spend so much time hustling my tribe and juggling the complexities of multiple needs and the day to day, I will happily settle for a nice cuppa and a choccie biccie (apricot danish!) curled up on the sofa with the dogs and a bit of tv
I’m definitely NOT in favour of multiple phone calls from various schools or panicking that as I’m rushing towards one hospital or meeting at short notice, I’m at least one hour in the wrong direction for something else.
So one particular Monday – and as the Boomtown Rats sung so perfectly ‘I don’t like Monday’s!’ – well certainly not that particular Monday anyway – my mundane plans for the week were, to put it quaintly, challenged.
Having been a tad poorly the preceding week and exceedingly (more) busy in the last month or so, I could put it off no longer: I was faced with the leaning tower of paperwork – assorted admin sh*ttery – I had regretfully decided it needed attention to get it back in balance and prevent danger to life should it inadvertently topple over and land on canine, feline or human.
I don’t know about you but there are many, many things I would rather do than admin. I’ve often procrastinated for so long and found other ‘vitally’ important jobs that MUST be attended to ahead of the dreaded paperwork (root canal treatment, counting how many 100’s and 1000’s there are in the cake decorating tub, measuring each blade of grass in the garden and such like…) that if I had but settled into a routine of knuckling down to the task in hand, I could have had it licked in a jiffy.
However, it had reached a point that I had concerns that the pile fell off the table onto the floor, it was likely to result in a crater that a meteorite would have been proud to have caused; or knowing my luck, would have “taken out” some well intentioned visitor/healthcare professional. “Where there’s blame there’s a claim!”
As it is, I’ve become an ‘expert’ at the initial sorting stage and convinced myself that I’m really not THAT behind on my filing capabilities (should that be culpabilities?! 🤔…. mea culpa) by flicking through the ruddy stuff and then just transferring it into assorted piles around the kitchen. I like to tell myself that in this manner I am speeding up the eventual filing process by accumulating it in batches of relevance. This means that whilst I’ve certainly reduced the height of the pile, in reality I’ve just created a further 17 smaller bundles of 💩 instead.
Every single time I give in (out of necessity) and resolutely tackle this curmudgeonly task, I vow not to leave it so long next time and just do it as I go along which would save me sooooo much time and aggro in the first place; yet even as I pat myself metaphorically on the back once the task is complete and I have given myself a stern talking too, I know I’m only fooling myself and it will all pile up again until with much wailing, gnashing of teeth and such like, the whole process will begin again. Sigh.
Even I couldn’t have come up with what happened next as my ‘get out of paperwork free pass’ on the great monopoly board we call life.
My mobile rang.
Not in itself unusual. I generally field a fair number of calls each day: pharmacies, medical supply companies, occasional chat with friend & my personal favourite: “you’ve been in a car accident that wasn’t your fault” variety.
There are only a few numbers/names that strike a note of trepidation when they pop up: GOSH, no caller id (technically not a name or number but usually a medical bod or of that nature) and Minx’s school.
Because Minx’s school are awesome they normally preface a conversation with “everything’s fine” before whoever is calling elaborates on the purpose of the call. But this time, the slightly harassed, borderline panicked tone of the receptionist keyed me into the fact that all might not be tickety boo.
“Are you around, nearby at all? Not to worry you but err….there’s been an accident and er…., well…. Minx’s feeding device has been inadvertently yanked out of her stomach….and there’s bleeding….and stuff……..!!”
Ahem….do you mean the tube that was placed in theatre in July???? The one that was really tricky to do and which should have been all over & done in the blink of an eye but after she had been down for more than an hour, I knew something had gone wrong or caused problems? The one that meant they had to scope her in the end to pass because they couldn’t get the other device out??? I barely heard the yup that followed,
Having assured the harassed receptionist I would be at school in lickety split fashion, I sped around the medical cupboards and the supplies in the garage whirling dervish style, heart pounding, feet of fury that would have impressed an Irish dancing fan.
Although there is on a ‘normal’ day only 5 minutes between our house and school, the perpetual road works that seem to have taken place along the road we live on pretty much since we bought the house 4 years ago, were in fine form. And of course red. As were the pedestrian crossing lights 500 yards from our house, then the lights on the railway bridge and the final pedestrian crossing right outside school. My language would have made a navvy blush…. & I’m pretty sure the driver of the JCB by the roadworks could lip-read…. 😳
Having made it onto school premises armed with enough medical supplies to open a mobile field hospital, I was ushered quickly to the medical room.
Lying on the floor looking very tiny & very forlorn was my gorgeous girly. A quick glance took in the pale but blotchy-red face, teary eyes, ENORMOUS white dressing secured to her midriff (think doorstop loaf of bread sized or at the very least maxi maternity sanitary pad!) GULP & then Minx’s best friend, also looking terrified and a bit blotchy as well as Minx’s 1:1 support doing her level best to seem calm,unruffled and reassuring but slightly wild of eye (think of a swan: serene on the outside, furiously kicking underneath)All eyes levelled on me & a rapid fire of voices trying to impart salient information with some urgency ensued.
Various words trickled through my conscience, none of them polite. False bravado firmly in situ, I braced myself to remove the make-shift dressing and hoped there wouldn’t be gore and intestines abounding.
I was slightly taken aback therefore to find only the teeny tiniest bit of 🩸 but nothing gushing, no horror-scenesque show and a rather sad looking little dimple where the feeding device should have been. For those on the squeamish side, rest assured, you can’t see into someone’s innards if the device has come out!
I managed to hold back the “is that it?! response and set about getting my supplies ready to replace her device. The important thing is to get something, almost anything into the empty tract ASAP.
The human body is so remarkable that it wants to heal itself and this process begins very quickly (20 mins is a bandied about phrase) so you have a short window of opportunity to keep the ‘hole’ open and replace the device used for feeding.
Prior to the new style device Minx had had inserted during theatre, I routinely replaced her mini ‘button’ at home myself every 4 to 6 months or so. It had now been over a year since I had done this and I was a little intrepid. It isn’t difficult per se, rather a bit fiddly and unwieldy as it’s made from malleable plastic and requires a surprising amount of physical pressure to secure the device properly into the intestinal tract.
I can’t speak from personal experience but from what I have gleaned, it shouldn’t hurt but can be uncomfortable – all medical professionals state that it doesn’t hurt but since in the majority of cases they don’t have personal experience either…..: anyway every button change we have ever done has been met by tears, anger, fear and a general NO response. My fellow tubie parents will likely tell you much the same.
So Minx was already a little traumatised from the previous device having been yanked out and nervous about the tract having started to close (she knows that worst case scenario this means another trip back to theatre) and fearful of me putting the new one. Smiling in a manner that suggested I had everything in control but with a heartbeat I felt sure all in the room could hear, I picked up the replacement button, sent up a heartfelt prayer and ‘popped’ the new one straight back into the hole with much more confidence than I was really feeling!
In first time! Boom! I couldn’t even do a happy dance or fist bump to celebrate as I had to maintain my air of poise and equilibrium (not often those 2 words are used in connection with me!) I quickly filled the little balloon that holds the device securely in place with water from another syringe, checked all was secure and that was pretty much that!
Relieved smiles and cuddles abounded and as it was nearly the end of the school day, it was agreed Minx could come home. I smugly tidied away my bits and bobs and had to play it down as all in a days work to the 1:1 (I had to at least seem I knew what I was doing right?!) when my phone rang again…. no caller ID…..
“Mrs DNTW’s? It’s the school nurse here from…….. Nothing to panic about but G-man’s been involved in an incident and there’s a problem with his feeding button, could you get here as soon as possible please….”
Resisting the urge to yell FML loudly, I hot-footed it out of the building, Minx droning in my ear about hadn’t she been brave and good and didn’t she deserve a lovely treat of some sort???
Anyway, I managed to sort G out as well, then arrived home hoping it was time for a gin
or three but resolute to the fact that the paperwork hasn’t been sorted, the dinner wouldn’t cook itself and the next days medications still needed doing….
So there you have it. Tube feeding is awesome and easy and nothing to worry about…. it’s just the company I keep and the circus I’m (allegedly) ring master of that means there’s never a dull moment…… 😊🤣