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WDW with feeding tube?

Andsparrow

New Member
So I'm a nurse with not that much experience with all the different systems that are out there but I would consider if your using a pump how long your battery source will last.? Also how long is the tube feeding in the "bag" if your gravity feeding? Do you have to worry about spoilage in florida heat and sunlight?

I am use to adults with tube feedings that are done usually overnight. Is that not something they can do with kids?

I work with RNs with much more experience in this area so if you have any questions I would love to forward them on.
Tubie parent here. Yes, some kids are fed overnight, but not all kids can be fed strictly overnight....many can't be. My 13 year old is fed only at night now, but for several years early on, his system couldn't handle intake feeds fast enough for feeds to limited to daytime. He needed pumped (slowly) a large portion of around the clock. Straying from the very low speed laid out meant puking, inordinate amounts of of puking...not fun for anyone, and worst of all, wasted calories that he really needed. I know that many kids are in the same boat, but I don't know how widespread that is, probably more common when things like GERD are on the table.

As for the battery thing, one charge lasts therabouts a couple of days, longer when not used near constantly, and that observation comes from experience with my son having years-long pairings with the two biggies in different popular brands. We always just popped the charger cord over to it overnight while he was in one place for awhile (sleeping), set him loose in the morning, and the battery wouldn't be halfway gone come bedtime. I promise, unless the pump unit really stinks, taking it around a theme park for several hours will bring zero concerns about if the battery life can tolerate it. If the pumps you are used to are questionable in the capacity to handle a day at a theme park without running out of batteries, please, please push hard for better ones, because much better do exist.

About the spoilage thing...I live in Iowa, as do hubby and kids. My son has been further west, east, and north, but never much further south, so I'm not sure how the humidity down there may affect spoilage rate on formula. Not living in that notorious humidity, my son has never had a problem with spoilage throughout the day. I was born in Panama and spent some years later on in Louisiana, so I understand that humidity well, though and now I'm wondering about about that question myself. I did know a kid in southern Louisiana who was attached to a feed and did just fine with it as is on her pole throughout the day (she was wheelchair bound, and just kept it on a pole attached to her chair), but she was also moving around between indoors and out; I'm not sure if they did anything special when she was going out for several hours at a time. I do know that they make thermal baggies to help keep the heat away better, and many models have cold pack slots to slide in cold packs, including the kind you you activate anywhere (so, of they need changed out, you can just bust out a new one and replace it, no freezer required). I know I've seen them on Etsy aplently, but I wouldn't be surprised if a medical equipment company had leads on any, too (maybe not so much in the fun, expressive fabric prints that kids love like Etsy offers, though...Elsa, Marvel, fairies, paw prints, dinosaurs, cats, or whatever the kid loves, so maybe Etsy is a prime spot to find these things). My son is clear that he does not like feeds going in cold, though; he can feel it and says it doesn't feel good, so maybe if using one of those, there's a way to warm the formula up somewhere along the feed line (would a handwarmer put somewhere on the feed line do it? I've never tried). He also has Sensory Processing Disorder, so maybe others are less keenly attuned to the temp of the feeds. I just know that he himself doesnt like cold feeds, BUT I've seen cooling system bags with glowing reviews for enteral feeds all over the place, so maybe he's just an odd case? Anyway, there are ways to keep enteral feeds better preserved, and I imagine a decent one would stand up to hot and humid environments well. I'd just kinda make sure that either the kiddo has no problem with feeds that are chillier, or that I've mastered a reliable way to warm it back up somewhere along the feed line before it hits the stomach before I opened the wallet for one. All that said, I wonder if anyone from the deep south or like temps have imput on formula spoilage rate in a place like that. We've never had a problem with my kiddo running around with his feed just in his pump backpack all day out in Iowa summers, but again, hot days for Iowa differ from hot days in a place like Florida, so I wonder. Either way, I'm sure mastering a cooling system bag for enteral feeds would do the trick if spoilage is a risk.
 

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