Pagan parenting, special needs style - one medically complex preschooler, one medically fragile toddler, lots of chaos.
Tuesday, February 7, 2012
Life With a Feeding Tube
Today's topic: Understanding Life with a Feeding Tube - Explaining a day in the life/daily routine of tube feeding and all it requires I think the hardest thing with Acorn was the puking. For a long time, he puked 5 or 6 times a day, every day. We could not go to a restaurant without him puking. If he picked something up and put it in his mouth he might puke. If he was mad he puked. If he was hurt he puked. If he was scared he puked. With Leaf, the thing to understand is that she is being fed continuously. 24 hours a day, she is hooked to a little pump, with a bag of milk or formula to feed into it. We carry it everywhere she goes, just like we now carry her ventilator and oxygen - everywhere - it's yet another tether. When the pump is empty, it alarms. If a tube gets crimped, it alarms. If it thinks it's done, which clearly it can't be since we're running 24 hours a day, it alarms. It alarms no matter what time of day it is because she has to keep being fed or she doesn't get enough calories and fluids to be healthy. We have a cute little backpack to carry the bag and pump in (actually, two different styles of tiny cute backpacks), but it's still there, in plain sight, everywhere we go. In either case, having a tubie means planning ahead. Depending on whether or not they take anything orally, you can't stop at a convenience store for milk, and you often can't stop at a grocery store for formula. You can't just run through the drive through and hand their share of dinner back to them in the back seat. When using a feeding pump, it also means being concerned about electricity. Most pumps will run 24 hours on a charge, but you keep it charging at home so you can go out. If the power is out very long, you can have a non-functional feeding pump, and that's not good either.
Posted by kadiera at 10:00 AM
Labels: food, medical, special needs
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