Tubies

Last week was Tube Feeding Awareness Week. A time for understanding of all things tubie. Kids (people really) are fed by tube in a few different ways for a number of reasons. The thing about cerebral palsy is that it can affect any muscles…and you wouldn’t believe how many muscles are involved in swallowing. 50. And some nerves. So, when they don’t coordinate properly, chowing down becomes a dangerous prospect. The joy of dysphagia.

Missy struggled from the very beginning. She could not take milk from the breast or bottle so a nasogastric tube was inserted within the first day of her life. Sounds simple doesn’t it? But imagine……your brand new baby has a tube stuck down her nose, along the back of her tiny throat and into her stomach the other end of which is taped to the delicate skin of her cheek. It was a life saving move but very difficult to come to terms with. Very. Toward the end of Missy’s stay in hospital my training began. She was seven weeks old and I had to learn how to safely reinsert her feeding tube. By that I mean…..terrifyingly push a tube down her nose then draw stomach contents up via a syringe to test for acidity. Low pH…you have successfully found her stomach. High pH….pull the tube out and start again before you put feed into her lungs and risk her life. Truly scary stuff. And, for a baby who struggled to bring her hands into mid-line, that kid could rip the tape off her face and pull it out with regular abandon so I got to practise reinserting it often.

By eight months of age the gut wrenching decision had been made for her. There was no way she could eat normally and a nasogastric tube is not a long term solution. My baby had to have a tube inserted directly into her stomach. It sounded so permanent. A  P.E.G (Percutaneous endoscopic gastrostomy). Her first surgery. General anaesthetic required. I feel teary just remembering. She managed the whole thing quite well but it did begin a run of surgeries to refit/fix the PEG and finally fit a Mickey button. There have been many ups and downs. She is largely lucky. Her PEG site is one of the healthiest I’ve seen with only a few skin issues and infections in all this time. {And they can be really yukky!} Granulation tissue….ewww. Easily giving her many meds…yay. The pulling out of the Micky button and the resultant flood of stomach contents out of the hole {despite being covered} all the way to Emergency…aarrgghhh. Having a kid finally at a stable, healthy weight…fabulous.

It certainly is a different way of living. Missy has a gastroenterologist and dietician to monitor her progress. We receive two months of specialised feed and tubes at a time. Replacement of a pulled out PEG has some urgency to avoid surgery. Until recently that meant racing to the Children’s Hospital. Now A and I have been trained to pop it back in. Fun times. There is a fair pressure to remember tubes when heading out. This kid cannot just grab a snack on the run! Maintaining the social aspect of meal time is important to her (and us) so she sits with us and  has tiny tastes which she thoroughly enjoys, then mostly coughs out. Such is the ebb and flow.

I think I have heard every tubie gag. “Gees that is easier than cooking”; “Could I just lay back and have beer pumped through that tube?”; “Well she wouldn’t be able to spit/vomit that out then!”. Oh that last one is so very wrong. Tube feeding is necessary – it keeps her alive – but it’s not all fun and flowers. There are many stressors in our lives and this is not amongst the urgent bunch….but it makes me ache for her. People see the wheelchair and focus on the difficulties of that and there are hassles  but it’s just her wheels. Having no ability to eat…and therefore to speak…makes me sad for her ( when I think about it…which I try not to.).

And then there are the oopsies. {Tube leaks, medication port left open, pump misbehaving.} A couple of nights ago we were rocking the routine and looking good for an early bed time. Then I saw it. The puddle. It may have been considered a small lake. On the carpet. Under her wheelchair. On her chair cushion threatening freshly applied pyjamas. Dripping stickily off straps and D rings. I swore. Turned off her pump and grabbed paper towel, a cloth, water and soap. Then I cried. The whole time I cleaned tears flowed. The early night was gone. The new carpet wouldn’t be the same in that spot. An extra job at the most tiring part of the day sucks. Not eating sucks.

On balance missing the enjoyment and social side of eating is not great….but living is. Being lucky enough to live at this time, in this country with access to the wonders of modern medicine means my kid can thrive. And for this I’m proud to be raising a tubie.

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