DS just got a Mic-Key G-tube today...

[triplefigs]

And he will be on likely continuous pump feeds for our February trip. We are still in the hospital (just had surgery today). What do I need to know about feeds in the park? Any advice for feeds in the room at night? Where would you hang a pump or will I need to call and get an IV pole delivered? What about flying with all the supplies?

We are a tad overwhelmed at the moment. He's been in the hospital for almost 3 weeks on and off, and this complication was not expected.

Thanks!

 

[SueM in MN]

Sorry to hear about the new complication.
When I left on my trip, it sounded like things were going well.

I don´t have any personal experience, but can tell you that you can carry any of the supplies he needs onto the plane with you. They wont count against your baggage allowance and the tube feeding solution is not subject to the TSA restriction of only 3 ounces of liquid. Check their website at www.tsa.gov ; the easiest way to find what you need to know is to do a search for medications and that should bring you to the medication information.

Hopefully some with experience will post, but I can also tell you that some people have posted in the past that they had their provider ship tube feeding solution to the hotel for them so that they didn´t have to carry it. Some people have also used a high bed point to hook the tube feeding on, but in our experience, many of the head boards are screwed to the wall, so your safest option may be renting the IV pole.
You could also rent a special needs stroller (there are some companies lised in the disABILITIES FAQs thread. If you are able to get one of those with an IV pole attachement, you could possibly park the stroller next to the bed and have the pole on the stroller do double duty. I have seen people doing feeds all over the parks (bolus feeds and continous feeds). You can store any solutions and supplies at First Aid at any of the parks.

Even though it seems overwhelming right now, in a few weeks you will be an old hand at it and things aill be much more settled by the time you go to WDW.

 

[alizesmom]

Just have a pole delivered to your room. You can ship the feeding supplies before you leave or see if you DME will contract them from a local place. Are the feeds continuous or just overnight? If continuous, just rent a wheelchair with an IV attachment. I'm sure there are others who can give you even better suggestions. Karen

 

[LindaBabe]

If they're not continous feeds, you can refrigerate at the first aid/baby care centers in the parks and they have an iv pole and facility where the feeding can be done.

 

[eternaldisneyfan]

I have 24/7 J tube feeds via pump with a G drain. If he needs the feeding pump during the day, do NOT use Kangaroo. The battery is pathetic. I use the FlexiFlo companion and it is excellent.

I carried my food with me in an ice chest on a wheelchair. A warning about cold food-it hurts the stomach. Let it thaw or warm up.

For night an IV pole is best. A hanger sometimes works.

If he rolls around a lot, watch the med port because it can pop open and leak food and gunk everywhere.

Tube feeds are pretty easy. Especially if you can still eat.

-Christamae

 

[mechurchlady]

I know somewhere in the last 26 hours this link and a couple others were posted. Maybe I will find it later.

http://www.mouseplanet.com/dtp/wdwguide/7_Children/general/baby_care.htm

That gives you an idea what the baby centers are like. The nurses station is the other option. At the baby centers there are microwaves for heating food so there will be no tummy aches from cold feedings.

 

[alizesmom]

As to heating the formula, heat water and set the container in that. Directly heating pediasure etc changes some of the chemical compounds. Karen

 

[Caltitan]

And he will be on likely continuous pump feeds for our February trip. We are still in the hospital (just had surgery today). What do I need to know about feeds in the park? Any advice for feeds in the room at night? Where would you hang a pump or will I need to call and get an IV pole delivered? What about flying with all the supplies?

We are a tad overwhelmed at the moment. He's been in the hospital for almost 3 weeks on and off, and this complication was not expected.

Thanks!

Our DD6 with severe CP has had a g-button for over 4 years now. After initially having the g-tube for 3 months she was converted to a g-button which is much easier to manage and more comfortable for her. Hopefully your child will be able to have a g-button by February. Due to neurological issues, my daughter eats only Pediasure formula, a little by mouth but most of it via the g-button. We bolus feed her during the day and run the feeding pump only at night. When we travel (including recent DW trip) we leave the bulky IV pole at home and take a Sharps Pitch-It IV Pole which is light-weight and stands 72" tall yet can collapse to a length of 28" so it easily fits into luggage. We've also hung IV bags from light fixtures and moved furniture around but the travel IV pole is much more convenient and worth the money. PM me if you want more info on where we got ours. If you are using formula, you can call your enteral supplies provider and ask them to ship the supplies you need to the hotel. Be sure to notify the hotel front desk in advance so they expect it and make sure it gets to you when you check-in. They are usually very accommodating when it comes to children and their medical needs. We usually pack her formula in luggage and carry-on the feeding pump, a few feeding bags, and a couple days worth of formula in case our luggage does not arrive with us. A carry-on with medical supplies does not count against your normal carry-on allotment. You do have to remove any formula cans for inspection when you go through airport security. When at the theme parks we bolus her somewhere uncrowded or go to the First Aid and use a room. They have always accommodated us with no hassle.

It is easy to become intimidated and overwhelmed initially after your child receives a g-tube. As the placement site heals over time, the care of it will become less, but be good about keeping the site clean and the tube flushed after feedings. With the g-button we are able to replace it ourselves every 6 months (a 3 minute process). I don't know the reason your child needed a g-tube, but be sure you continue to work with the GI doc on nutrition and, if applicable, any feeding program that works toward eliminating the use of a g-tube in the future. If your child required a g-tube because of failure to thrive, then please know that you have not failed as a parent. Instead, you are to be commended for making sure your child is receiving the medical care they need so they can grow and develop to their full potential or beyond. I hope your child's health improves and your trip in February is the best medicine for your entire family. By then, you and your child will be pros at managing feedings.

 

[Lillypug]

My son, Noah, is 8 and just got his mic-key button in April. He also had the Nissen fundoplication done at the same time for reflux. We had a VERY long recovery. Noah was about 30 lbs at the time and very frail. As of today he is 39 lbs and no longer suffers from reflux. He has CP and eating by mouth would absolutely wear him out.

Noah is on continuous feeds during the day and the best advice I ever received was to ask for a Zevex Enteralite pump (thanks to another wonderful boardmember.) If your child is ambulatory the Zevex infinity is even smaller than the enteralite. The pump, tubing and bag all fit in the very small backpack that goes with it. Noone even realizes Noah is being tube fed during the day.

As for traveling, we drive to WDW, so we just packed Noah's pediasure with our luggage. Noah is on feeds for about 13 hours and he usually does them during the day but while we were at WDW he was hooked up at night. Noah is also in a wheelchair so disconnecting his extension set when he needed to get out of his chair was a bit cumbersome, not to mention the constant tugging on his new site since we went at the end of May, less than 2 months after his surgery. Also, in a pinch a clothes hanger works well as an IV pole. We would leave the pump and bag in the backpack and hang the back pack from the clothes hanger that was hooked onto the light fixture above the head of the bed, lol. Noah eats by mouth too so during the day he ate with us at all of our meals.

Take one day at a time. (((((HUGS)))))) Praying for a recovery at Godspeed for your son.

 

[Camster0307]

My daughter has a g-tube and we too have used the Zevex pump. I loved it because it was so small and easy to carry around. Recently, it needed repair and as a replacement, our homecare company sent over the Kangaroo Joey - much smaller than the regular Kangaroo pumps. I haven't had a problem with the Joey's battery life, but then again, my daughter is on bolus feeds only three times a day, so I'm not out and about using it as much.

We go to Disney quite often and have never had a problem. I ship my daughter's enteral supplies ahead of time and have my equipement company supply an IV pole for in the room use. While we're out at the parks, I too will just try to find a quite place to hook up my daughter's feeds, but sometimes it's just not possible and I wind up doing it right out in the open (keeping my daughter's belly covered though)! I will agree that the first aid stations are a wonderful place to utilize also!

ps - I had been following your son's story on the thread on the Community Board. Sorry it had to come to him needing this, but hopefully this will help get your son going in the right direction!

 

[WLodgeLizard]

Some of these things have already been mentioned, but what has worked for us is:

-packing at least enough formula for 1 day and 1 night (magical express can be slow to deliver your luggage) and the pump in the carry on, everything else packed in the check-in luggage, count on showing everything to security, but they are usually very understanding

-we found that the floor lamps in the rooms work great as IV poles, just unscrew the top, remove the lamp shade and put the top back, just remember not to turn on the light

- we also bring along the 3M hooks, just in case, just make sure they are the heavy duty kind

- have fun

- the g-tube is a little daunting at first, but soon you will wonder how you lived without it.