feeding tubes

[LavenderPeach]

Just curious if there's anyone else out there who has a feeding tube or has a child with a feeding tube. Any interesting experiences or comments from people while at the parks? DS who is 3 has had a feeding tube his whole life so I'm used to feeding him out in public but maybe someone has some good tips for feeding tubes at DL/WDW. Usually if I'm feeding him while we're out we will get a few people looking over to see what i'm doing but that's about it.

 

[alizesmom]

Alize has a g-tube and we just fed him as needed. We usually went somewhere, such as first-aid, where he could be out of his chair and comfortable. If we needed to we just fed with minimal problem. I do admit that I often have to be hit over the head before I realize that someone is staring at us. Karen

 

[eternaldisneyfan]

I have a gj-tube. I do 24/7 feeds via pump. I also have a trach and vent and wheelchair. I say do what you need to when you need to. It's just eating.

 

[LavenderPeach]

I have a gj-tube. I do 24/7 feeds via pump. I also have a trach and vent and wheelchair. I say do what you need to when you need to. It's just eating.

Yeah, I'm not really worried about it, just mainly curious if anyone has had interesting experiences regarding g-tubes in the parks either positive or negative.

By the way, I just have to say I that I am so impressed that you went to WDW with a trach and vent. I didn't read your whole trip report but I'm going to have to go back and read the whole thing to see how that was accomplished. Again, I'm really impressed. DS was on a vent for 15 months and had a trach for 18 months and I can totally appreciate the amount of equipment and supplies that must have been for you to take. I know that for us just a trip to the doctors was a major ordeal.

 

[AKADrea]

we're just doing night feeds, but I agree - just do it People are gonna stare no matter what, and kids will ask about it. Try to think up some good responses and keep it light

 

[dclfun]

I also have a feeding pump that goes 24/7. Most people don't notice it, but like Christamae, more people stare at my vent. I also have a service dog so she gets most of the attention since I've had her with me. I've seen people feeding children via tubes on park benches before or from their strollers- I think more people are out and about with medical equipment and thus more and more folks are used to seeing feeding tubes, aka "fine dining".---Kathy

 

[MarieS]

My 16 year old son has a gtube. We went to First Aid to feed him. They have cots to lay down on so he could get a break from his wheelchair. It's also air conditioned so you can cool down. He prefers ( me too) to have privacy for tube feeding since he gets stared at enough already with the wheelchair, nonverbal, etc. He is more aware of this than he was as a little boy and doesn't like people staring at him. He's not on a continuous pump and his bolus takes an hour so there is no way to do this discreetly in public.

 

[Momma2dakidz]

Not disney but feeding tube related.

Little girl i was a nanny for had a mic-key. well, no 3 year old sits and eats at a play ground so i would just bolus her every few minutes. I had a parent come up to me one day and demand i stop doing medical procedures in front of her young child. LOL.......the young child was @ 10! She went as far as calling the police!!! She didnt like when i started spouting off ada rule numbers.

Same playground different day, meg had ate(tubed) before we left for the park. we got there and she gets up to the top of the slide and starts refluxing out of her tube (came undone) and mouth. Her entire feed was sliding down the whirly slide. LOL How the heck do you race up to help her, clean up that mess, replace a tube, clean up a formula slathered toddler, and deal with yelling parents all at the same time. (how dare i bring my toddler when she is obviously very sick and needs to see a doctor. ugh!)

Btw this was all when i was 16!!!!! so i had the stares of what a horrible teenager to have a child when she is so young along with the medical drama stares. Her daddy bought a very large home play system and inground pool shortly after. That little girl is my hero she has overcame so much and has done so well with her life! she wasnt supposed to live 2 days, if she did was going to be severely delayed. she is totally caught up and in middle school with no supports and pulling all a's!

 

[angelbearmom]

I've been to DL with my dd and DW with ds both of whom were/are on continuous tube feeds with pumps. It wasn't a big deal for either of them. We just continued on with our days. Just a caution if your child is on a feeding pump; make sure you disconnect tube if you are taking them out of their chair to go on a ride-I know that seems pretty self evident, but I found that it's easy to be distracted at DW and am afraid I might forget. Now ds is too heavy for me to lift onto rides so he only goes on ones where he can stay in his chair. I also have found the first aid stations very helpful with any extra help or privacy needed for tube feeds.

Another caution would be to make sure you've got good ice packs to keep formula cold in the heat. Because ds is fed slowly his formula stays in his bags a long time. So I take extra bags with me and just throw out bags rather than washing and reusing them.

We go in 8 more sleeps!!!!!!!

 

[LavenderPeach]

Not disney but feeding tube related.

Little girl i was a nanny for had a mic-key. well, no 3 year old sits and eats at a play ground so i would just bolus her every few minutes. I had a parent come up to me one day and demand i stop doing medical procedures in front of her young child. LOL.......the young child was @ 10! She went as far as calling the police!!! She didnt like when i started spouting off ada rule numbers.

Same playground different day, meg had ate(tubed) before we left for the park. we got there and she gets up to the top of the slide and starts refluxing out of her tube (came undone) and mouth. Her entire feed was sliding down the whirly slide. LOL How the heck do you race up to help her, clean up that mess, replace a tube, clean up a formula slathered toddler, and deal with yelling parents all at the same time. (how dare i bring my toddler when she is obviously very sick and needs to see a doctor. ugh!)

Btw this was all when i was 16!!!!! so i had the stares of what a horrible teenager to have a child when she is so young along with the medical drama stares. Her daddy bought a very large home play system and inground pool shortly after. That little girl is my hero she has overcame so much and has done so well with her life! she wasnt supposed to live 2 days, if she did was going to be severely delayed. she is totally caught up and in middle school with no supports and pulling all a's!

Wow. I can't believe that lady called the police! And how awful to have that unfortunate incident on slide.

And thanks everyone for the suggestions! DS actually is only on bolus feeds during the day and they don't take that long (15 min) so it's really not a big deal and I feed him in public all the time so am used to the occasional stares but it's good to know that we can go to First Aid for some A/C and privacy if we need it.

 

[drinkme]

Just curious if there's anyone else out there who has a feeding tube or has a child with a feeding tube. Any interesting experiences or comments from people while at the parks? DS who is 3 has had a feeding tube his whole life so I'm used to feeding him out in public but maybe someone has some good tips for feeding tubes at DL/WDW. Usually if I'm feeding him while we're out we will get a few people looking over to see what i'm doing but that's about it.

We were at DLR last summer when my ds7 had his mic-key. He just had bolus feedings, so we would head over to the first aid station about every 3 hours for a feeding. It was great to have a cool place to give him his feedings. The rooms had full sinks which was also nice to have right there. The parks were very busy during our trip, but we never had to wait for a room at the First Aid station.

For the flight, I taped up 2 cases of formula and checked those with my luggage. I also had 3 cans of his formula in my carry-on luggage. I had the doctor write a note stating that his formula was medically necessary. I'm so glad I had that doctor's note because during the security check, they required to see the note. I couldn't imagine what I would have done if I we couldn't have access to ds' formula until after we landed! It was well over 7 hours from the time we got to the airport, until we landed.

HTH