Where to do tube feeds

[HuskerSarah]

My son requires gravity tube feeds and I am wondering if there is a discreet location in the parks to do this?

 

[Miss Peach]

I would suggest the Child Care Station or First Aid, both are set up for some privacy and quiet.

Cathy

 

[visitingapril09]

We use the First Aid station for diaper changes (he is 12) tube feed issues, meds etc. They are awesome there and kind of serve a dual duty of being a first aid center and also there for medical needs like you and I have to deal with.

 

[dreamsofdisney]

We're leaving in just over a month for our Disney vacay! This is is our first trip with DD2 who is a former 1 lb 2 oz preemie. She has mid cerbral palsy, and a zillion other minor health compliations, but the most difficult is the dysphagia (difficulty swallowing). At home she takes about 16 oz/day of Pediasure by bottle, but only when reclining with her head turned to the side due to a glottal gap. She frequently (4-6x/day) vomits if she gets even the smallest bit of food in her mouth, or if liquid goes down the wrong tube, which it frequently does. When we are out and about, she almost never "eats" p.o., and isn't able to swallow anything other than the Pediasure, so she is supplemented with tube feeds. She also has a continuous feed overnight.

I was planning on using the Baby/Child Care centers in the parks if we need a quiet spot to try to feed her p.o. If I find a quiet corner, I might even try there, although it will be hard without my trusty boppy!


I was planning on just hooking her pump and backpack (loaded with icepacks) on her stroller and giving her feeds here and there when she'll be sitting still for a little bit: during parades, shows, or when she's in the high chair for mealtimes while the rest of the family eats. Becase she has the pump (and not gravity feeds) I guess it's easier to be discreet, but I don't mind if people notice. I am nervous about her tube getting pulled out, getting her to sit still long enough for a feed, and it hindering her ability to move around and visit with characters.

Good luck to you! Hope you have a magical vacation!

 

[alizesmom]

I just feed my kids wherever we are when they come due. If near the first aid station, it is a great place to rest and do things in peace and quiet but I never noticed people staring if I feed the kids in public. Karen

 

[darthspud]

theres generally lots of little quiet nooks and crannies at the parks to sit and do his feeding so you can people watch / take a load off take in the scenery while still doing his feeding in an out of the way area..

 

[mdvlprof]

I just feed my kids wherever we are when they come due. If near the first aid station, it is a great place to rest and do things in peace and quiet but I never noticed people staring if I feed the kids in public. Karen

Same here.

 

[Vanvmom]

My daughter does pediasure too (1.5 version), and will likely soon have a feeding tube and pump. We've found using the babycare/first aid area quite wonderful!! First aid will also refridgerate my daughter's meds, and they have a sharps box for needle disposal.

 

[LVMom23]

I just feed my kids wherever we are when they come due. If near the first aid station, it is a great place to rest and do things in peace and quiet but I never noticed people staring if I feed the kids in public. Karen

We are the same way. Our daughter is 100% gravity fed (Vital Jr), and we used to try and be discreet in the beginning. Now, we just do it whenever or wherever. The only thing we try to avoid are areas where Hannah would get excited because when she gets happy and pushes out her stomach, well, it is a losing battle trying to gravity feed her.

 

[dreamsofdisney]

I posted earlier in this thread about this, but as our trip looms closer, I'm finding myself totally stressing out about the feeds.

This is our first time at WDW with DD2. At home, she takes about 16 oz a day p.o.(by bottle), but NEVER takes a bottle outside of the house...even in familiar places. We'll probably try the bottle at the Baby Care/First Aid center, but we don't anticipate it being successful. She'll most likely get all of her daytime feeds via tube. She has a pump (not gravity feeds) but now that she finally walks, she is impossible to keep still for a feed. The best we can come up with is to try and hook her up whenever she's going to be strapped in her stroller for 30 minutes or more, during our mealtime, and when she naps (once a day.) We're SO worried about her not getting enough nutrition and staying hydrated! (Even DS18, who has Autism, came to me the other day and said he was worried about her "overheating and getting dehydrated.") As it is, she's been on an awful sleeping pattern, which I'm trying to break before we leave. She stays up til 11 or so and sleeps in 'til around 9 or 9:30. Since we're hoping to make it to some breakfast ADRs at 8 or 8:30, and there are some late nights planned, that doesn't leave a lot of time for overnight feeds.

I'm not worried about what people think if they see her getting her feeds. I'm more worried about finding the opportunity/time, and not having her button pull out in the park...on the monorail...on the bus...you get the point!

Sorry for the rambling post. I'm trying really hard not to stress, but even DH is getting nervous.

 

[LVMom23]

Is it possible to do gravity feeds in spurts?

When we transitioned Hannah from the pump to gravity, we started at 10 mL every 20 minutes at first and gradually was able to get to where we are today (60 mL formula and 20 mL water every 45 minutes up to 240 mL then a three hour break). If you were able to start this sooner than later, perhaps you can build her up to make it easier to feed her.

But if she has to stay pump fed, then I hope others in similar situations can help you out with suggestions.

 

[dreamsofdisney]

Is it possible to do gravity feeds in spurts?

When we transitioned Hannah from the pump to gravity, we started at 10 mL every 20 minutes at first and gradually was able to get to where we are today (60 mL formula and 20 mL water every 45 minutes up to 240 mL then a three hour break). If you were able to start this sooner than later, perhaps you can build her up to make it easier to feed her.

But if she has to stay pump fed, then I hope others in similar situations can help you out with suggestions.

THANK YOU for this!!! I don't know why, but no one (therapists, GI docs, etc.) has ever eve mentioned gravity feeds. In fact, I wasn't even sure how it worked, or if it would be appropriate for DD.

Then last Thursday (right around the time of your post) DD suddenly stopped taking any food by mouth. She didn't seem to be sick, but I think she's cutting her two year molars. Anyway, it's nearly impossible to get her to lie still during the day (when she's awake) to get her pump feed. In the past, we would've let her go a little low on feeds and then hook her up during her nap. Instead, I started thinking...

When she does eat by mouth, she takes anywhere from 40-100mls/feed in about 5 minutes. She usually eats every hour and a half to two hours. Why not try to do gravity feed?

I started off with just 10mls and she didn't flinch. I gradually increased in 10ml spurts til she got to 60mls. She has NO PROBLEM with 60 mls and it only takes a couple of minutes tops! What a revelation!!! We were able to give her 60 mls, try a bottle again an hour and a half later, and then give another 60 when she didn't take the bottle. (She needs to get a minimum of 480mls during the day and 500mls overnight.)

Obviously, we still want her to take her feeds p.o. as much as possible, but it really helped ease her minds when she wasn't eating last week, and it will be soooooo much easier in the parks if she won't take a bottle. We'll just make sure she has sips of water, too, just as we would if she were getting pump feeds. So much better than depending on the pump and all the hook ups, button pushing, etc.

So a great, big THANK YOU for your suggestion! It's made a HUGE difference!

 

[LVMom23]

So a great, big THANK YOU for your suggestion! It's made a HUGE difference!

Yay! Glad I could help

 

[mdvlprof]

THANK YOU for this!!! I don't know why, but no one (therapists, GI docs, etc.) has ever eve mentioned gravity feeds. In fact, I wasn't even sure how it worked, or if it would be appropriate for DD.

Many, even in medical field don't know what a gravity feed is. I can't tell you how many RNs we've had to show how DS gravity feed works.