Toddler on continuous feeding becoming more mobile

[PerfectlyPlump, ADN, RN]

Hi all,

My client is starting to crawl. She is still too small too carry a backpack. She also is set up with a Farrel bag for continuous venting during her continuous formula feed. She cannot yet tolerate bolus feedings, according to the last swallow sturdy.

How will her mom and I keep her safe, fed, and still allow her mobility? Right now we constantly watch her, untangle her tubing, and move her back to her pump and bag. I don't mind chasing her at all, but she is only going to get faster, and more ambitious. Any suggestions will be appreciated!

[CloudySue]

Ugh, what an awkward age! It will pass soon enough, but probably not soon enough for everyone else involved. Can the doctor allow some time down from the continuous feed? Is this feed all day AND all night? They make tiny backpacks and I've seen very small crawlers w a backpack with very small amts in their feed bag at any time. You still have to hold the Ferrell up, though, I'd imagine.

Right now I'm dealing w a trached 13 month old who keeps tearing off her T-piece mister and HMEs, even in her sleep. It's a bad age for medically fragile kids on the move!

I know this post isn't particularly helpful, but it's full of empathy.

[ventmommy]

The parents can make (or have made) a small cart with very easy, fully rotating wheels for her pump, food and Farrell bag. They can add a handle so when she gets to the walking stage she has a little walker instead of buying all those little play walker toys. The lower to the ground everything is, the more stable it will be. Let me see if I can find a pic of the one my friend made for the vent and feeding pump. It was PVC and wood and both very cute and functional.

[CloudySue]

Or expanding on that thought, a toy walker could be converted into an equipment cart!

[wooh, BSN, RN]

Even if not ready for bolus feeds, can they get the feeds spread over 20 hours rather than 24? Or even down to 22 hours per day. That way there are a couple hours for "tubelessness" fun.

And much better just dealing with a GT than with a trach at this age!hehe! I always love how proud of themselves they look when they get themselves unhooked from things. :)

[PerfectlyPlump, ADN, RN]

Thanks so much for the ideas, empathy and laughs. I will start working with the parents to come up with a device as you suggested. And yes, I do see how much MORE excitement we could be having if our toddler had a trach!

[PerfectlyPlump, ADN, RN]

A picture would be very helpful. Thanks!