Ever wondered how having a tube impacts on everyday life? Here’s a little insight into a typical day in the life of my tube-fed child:
6am – 8am – Whilst we try to leave M sleeping as late as possible, our day starts much earlier. Mike’s alarm sounds at 6am and then follows a perfectly honed routine of taking M’s 1000mls feed out of the fridge, warming it in a bowl of boiling water, aspirating his tube (hopefully with as few interventions as possible), fitting the bottle, feeding kit and pump together and then starting the feed itself at as close to 6.30am as can be managed. Allowing M to continue to snooze for another hour or so, with his pump fully supported and protected in his bed and the tube taped securely to his back to avoid accidents, is necessary for all our sanity, not least because he still hasn’t mastered falling asleep much before 11pm each night. Once M’s feed is started, it’s the turn of the rest of us to get up and make sure we’re washed, dressed and eating breakfast before I wake M at 8am.
8am – 8.30am – This 30-minutes window is dedicated to M – getting him up, washed and into his school uniform, whilst negotiating his tube and the pump without too much interruption to the feed going in. M is evidently a natural contortionist and has not only worked out how to thread his pump and tube through the neck of his clothes whilst still attached, but also how to do it the right way round – no mean feat for a child with dyspraxia and a challenge that has been known to flummox this Mummy more than once. However, on school mornings I take the easier option of stopping his pump for 5 minutes and disconnecting his tube to allow him freedom of movement and giving me time to put the pump-stand securely into his back-pack.
8.30am – 9.30am – Pump attached and back-pack secured ready for school, we head out of the door and race off to meet up with the walking bus to get G and M to school on time. Depending on the day, we have to make sure we have the correct selection of bags and other extraneous items with us – school bag, packed lunch for G, water bottles for both, cello or clarinet plus music, PE kits, swimming bag, my packed lunch, my “M” bag (containing spare NG-tube, spare feeding kits, pH strips, 60mls syringe, cooled water for the flush, spare tape and his lunch-time medicine), the 500mls feed for the days when my Mum picks up from school, handbag, office keys, house keys and car keys; oh and mobile phone, mustn’t forget the all important mobile phone! Once at school, G and M go their separate ways with their friends, I pass on any useful information to key members of staff and then head off back to my car for the 5-minute commute to my office.
9.30am – 1.30pm – Fingers crossed this 4-hour slot should be a quiet one. Whilst I’m busy working away in my office and partaking in the occasional cup of tea, M is enjoying a morning at school with his backpack firmly attached to his back at all times. We’ve worked with the school to make some adaptations to allow him to participate fully in all lessons and he’s finally garnered the confidence to run around with his friends at play-time. He will sometimes request a break from the pump if his tummy starts to ache and the school have been trained to know how to switch his feeds and the pump on and off. This 1000mls feed takes nearly 7 hours to give and so I head back up to school for the end of lunchtime play to switch the feed off, disconnect M from the pump and flush his NGT through. The last few weeks I have been working alongside 4 members of staff, who are now fully trained and proficient in M’s needs and they will be taking this role on fully after half-term, meaning less disruption to my working day. Pump and backpack abandoned and medicines administered, M now has the rest of the school-day “pump-free” and I head back to my office.
3.30pm – End of school and on to the next part of our day. On the days when G and M go back to my Mum’s house after school, she first drops M at my office, where I reconnect him to the pump and the 500mls feed begins before I send them on their way and carry on with my work.
4pm – 5pm – If I’ve been the one to meet them at the school gates, then this signifies the busiest part of my day so far. We start with music practice for both children before they’re allowed to even consider asking for time to play on their tablets or to watch TV. As the gentle strains of music float down the stairs to the kitchen, I’m busy prepping everything for the hour ahead. I take the 500mls bottle out of the fridge and start heating it up, ready for a 4.30pm start time. I boil the kettle to make the feeds for the next day, running between kitchen and dining room to gather up all the necessary sterile medical supplies from the stockpile we have hidden in there.
I prepare the 2 mixes of medicine for M to take the following day and store both those and the feeds on the top shelf of the fridge. In between the kettle boiling and the feeds being made, I will hopefully have managed to check M’s NGT placement and will get the feed started on time. Next it’s on to making packed lunches for G and me for the next day, alongside prepping dinner for G and almost inevitably dealing with the requests for a drink, a snack and tablet time from both children. If I’m lucky, I’ll also have managed to wash the syringes and medicine pots, washed the empty feed bottles for the recycling, pulled out G and M’s homework books and might even have had time to take my work shoes off and pull my slipper boots on!
5pm – Bedtime! – The rest of the evening is spent convincing M and G to do homework, hearing them read, monitoring their screen time, peace-keeping, deciding on dinner for Mike and me and any one of a million other tasks that parents across the world are having to complete on a school night. Friday nights include a 3-hour stint at Stagecoach for G, M and currently for me too as I need to be on hand to tape down his NGT for dance, attach him to his pump during singing and drama and just generally monitor that nothing goes wrong whilst he’s there. Twice a week that list includes choir rehearsals for me as well as the monthly PTA meetings and the not-so-regular book club meetings I enjoy (assuming I’ve found time to read the book!). We start the bedtime routine at around 7.30pm and insist that lights are out for G by 9pm. M then spends the next few hours until somewhere around 11pm reading books, playing his cello, composing music on his ukulele, playing games and listening to music. He will finally go to sleep once I’m upstairs and going to bed myself and, if Mike is lucky and times it perfectly, by the time he’s put M’s pump on to charge, tidied up the kitchen, put the cats out, set the alarm and come up himself, M will be fast asleep alongside me and it’s a simple case of moving him back to his own bed. On a good night, we might then get 6 hours of uninterrupted sleep until our day starts all over again.