Melanie Dimmitt chats to a parent and support worker who, like her own family, have navigated tube-feeding with help from Hireup.
When I first started tube-feeding my five-year old son, I wasn’t good at it. I remember needing two hands and a lot of concentration to clamp the tube - something I failed to do while demonstrating Arlo’s new way of eating lunch to his preschool teachers, and so squirted my frazzled self with stomach juice.
Our early weeks of adjustment were messy - emotionally and otherwise - but we weren’t alone in this journey. Arlo’s Hireup support worker, Maddy, was as keen as mustard to give tube-feeding a go. She mucked in, learned a lot, and helped Arlo get the nutrition he needs, safely, with a side of fun.
Together, we fumbled our way to a one-handed, single-action tube clamp. Something that Michelle Agostino mastered many years ago.
Michelle’s nine-year-old son, Domenico, has been tube-fed since birth. When he was two, Michelle was allocated a disability support worker, Alax, from a provider that didn’t allow its workers to tube-feed. Then the NDIS rolled out and Alax jumped ship to Hireup.
“So I taught her everything,” says Michelle. “I started with teaching her how to give Domenico water and nowadays, besides changing the PEG, she knows it all.”
Prior to Alax learning the ropes (or, tubes) Michelle had been the primary person in charge of her son’s feeding regimen.
“It's a huge relief knowing that there’s someone else that can care for Domenico,” says Michelle. “If I need to do something, Alax knows how to feed him. I don't have to be at home and wait for the feed to get done. It gives me a bit more freedom and a bit more of my time back.”
Image: Arlo and his Hireup support worker, Maddy
Recently, Michelle has hired two more Hireup support workers for Domenico - one with tube-feeding experience, the other eager to learn. To help the transition, Michelle put together a book about Dominco that details his doctors, therapists, medication and how to help him eat.
“Tube-feeding is quite easy, but it’s daunting at the start for everyone,” says Michelle. “To help remove some of the mystery, I like Domenico’s support workers to know what the PEG looks like outside of his tummy, so I’ll grab a new one and show them.”
Alax, Domenico’s long-term support worker, discovered what his PEG looks like outside of his tummy in more dramatic fashion.
“I was helping Dominic with some personal care - I think he was four or five at the time,” Alax recalls. “I went to take his shirt off and discovered there was a hole in his stomach where the PEG should have been. I screamed, Michelle!"
One swift new PEG insertion by Michelle later and everything was OK - although Alax remained alarmed. “I completely freaked out,” she says. “At that moment I was like, ‘I'm not doing any PEG feeding anymore’, but not long after that I came to terms with it again. It just takes time to learn and, sometimes, a really traumatic experience to be OK with this,” she laughs.
Now seven years into their support relationship, Alax will often help Domenico tube-feed at family outings. “Michelle has taken me to a family wedding a couple of times,” says Alax. “I’m not going to say no to a chance to dress up - and that way Michelle can engage with her family and have fun with her kids. She can enjoy all the other parts of being a parent.”
Image: Domenico and his Hireup support worker, Alax
Alax also supports another Hiruep client with tube-feeding. “I was happy that I had all these years of experience and could say to this client, I know how to PEG feed. That was a really big part of my training support that they didn’t have to worry about, which makes a big difference.
“At the end of the day, everyone needs to eat and some people need support to be able to do so - whether it’s via a PEG or spoon-feeding or assisting someone to chew. Whatever we can do to help is part of our role as a support worker.”
It's Feeding Tube Feeding Awareness week, so check out the launch of The Blend, a free, magazine-style resource for the tube-feeding community.
