G tube mamas--any tips?

[luvsviola]

My foster son has a G tube, and is on continuous feeds. He is 13 months old. We need to keep ice packs in his G tube bag. He has an infinity pump, so it is fairly small.

We are potentially staying at the All Stars. But we need access to a freezer to make ice packs, and fridge for meds.

Anyone done this before? Does Disney have freezers available to use in rooms, and potentially in the parks so we can swap out his ice packs during the day? It would be a PITA to keep going back to the hotel every 3-4 hours to swap them out.

Thanks for any help!

 

[ilovepooh]

I would call ahead and ask them what to do to keep the freezer packs frozen at the hotel. We bring a small cooler to keep in the stroller that has the ice packs in it with the formula. It stays cold all morning, but we go back to the hotel at lunchtime to refresh anyway. We just throw them back in the freezer.

You might be able to check with the 'baby care centers' in each park to see if you can leave a few ice packs there to keep cold while you're walking around. Then go back to the center to get them when you need more. ?? Not sure if they'll do this, but it's worth asking. Good luck!

 

[SueM in MN]

All Stars does not have refrigerators in the room, but you can get one for medical reasons free of charge. There are 2 sizes, a small one about the size of a very large shoebox and a larger, dorm style one. Let them know that you have medication and tube feeding formula you need to store.

Neither of them actually have a freezer section - the dorm type one may have a small freezer section at the top, but those are often not cold enough to make ice.
There are ice machines by the pop machines in each section of the hotel. What some people do to keep ice packs cold would be to fill their ice bucket from their room with ice and then put the ice packs in it. That should be cold enough to freeze or close to freeze your ice packs. Ice is free and you can get more whenever you need to.
I have also seen collapsible large food coolers at Sam's Club that say they will keep frozen food frozen for up to 5 hours. One of those filled with ice should restore your gel packs overnight.

For the parks, First Aid should be able to store ice packs or extra formula for you (since it is for medical, not just baby formula). There is a First Aid in each park and they are open the same hours as the park.

 

[ummchacha]

Like the last posted stated, First Aid may be of help to you. I have sent several kids to WDW with the Infinity Pump, and they have all used First Aid to store some formula. They cant keep much in there, but I would imagine I am sure they could keep enough for the day, plus a few ice packs. I have suggested to parents to use the 500 ml sterile water bottles. They are durable, seal well, and you can easily put your information on the front. I am sure you know this already, but be sure you have an extra bag and extension with you. You know, that whole Murphys Law thing.......

 

[Kim in PA]

And don't forget an extra Mickey button (if that is what you use). We never go anywhere without one after Ashley's Mickey came out accidentally at a picnic and we didn't have a replacement.

 

[visitingapril09]

And don't forget an extra Mickey button (if that is what you use). We never go anywhere without one after Ashley's Mickey came out accidentally at a picnic and we didn't have a replacement.

VERY good point! We take it all out of the packaging and put it all in a zip lock bag and carry it in a pouch on the back of his wheelchair.

You can also buy those first aid packs. You break a seal on the inside and they stay cold for a couple of hours. The cost would be more but it would be handy in case you run out of options to keep you ice packs cold.

Kim in PA, I peeked at your adoption site. What a lovely family you have!!

 

[Kim in PA]

Thank you!

 

[Kim in PA]

Here is another question for the G-tube Mamas (I like that). My daughter can eat and drink by mouth, but we suppliment through her Mickey as she is still FTT and still has reflux despite having the Nissan Fundiplication.

She is not a big drinker, and is not used to being in the Florida heat, so we will definately being adding water. How much additional water do you give to your child through the G Tube due to the heat? We are leaving in 8 days!

Thank you for your help!

 

[ummchacha]

Here is another question for the G-tube Mamas (I like that). My daughter can eat and drink by mouth, but we suppliment through her Mickey as she is still FTT and still has reflux despite having the Nissan Fundiplication.

She is not a big drinker, and is not used to being in the Florida heat, so we will definately being adding water. How much additional water do you give to your child through the G Tube due to the heat? We are leaving in 8 days!

Thank you for your help!

I would suggest running this by her doctor. Might be best to use some pedialyte or gatorade in combination with water....really depending on her weight. It isn't so much the fluid that is of greatest concern, it would be her electrolytes.

 

[Kim in PA]

I didn't even think of taking Pedialyte! I am sure that is what they will want her to have.

She is not a picky eater, but she only eats a bite or two of everything and then wants to eat again a half hour later. She just doesn't get enough calories that way and with the heat it will be worse.

Here is a picture of Ashley when she was 2. She came home from Korea at 16 months.

And here she is with her sisters on our first Disney trip at age 4.

 

[ummchacha]

Your girlies are so beautiful!!

Just give her GI doc or PCP a call for some guidelines. I know what I generally have had parents do, but each doctor has his/her own protocol to follow. Depending on Ashley's PO intake, free water may be appropriate for her.

 

[Kim in PA]

Thank you!

 

[daisy37]

We stayed at Pop last month. I had called in advance to get a fridge for medical reasons and inquired about a freezer for ice packs. I was told there was a freezer and there wasn't. However, I was able to leave my ice packs at bell services (can't think of the name). There is someone out there until midnight. The front desk also told me if nobody was there, they would still be able to retrieve. Bell services also has a fridge so we were able to store DD's meds on check out day.