Traveling with a child with a GTube

[Vanvmom]

Our daughter is having a gtube put in 3/29 and we were looking to take a Disney cruise 4/27. Looking for advice from anyone who has traveled with a gtube before. She will be pump fed at night. Do you think we are too bold to attempt to travel a month after her surgery? Yes, we plan on getting a dr. note.

 

[HowdyHeidi]

Hi. DS has had a gtube for several years. Did you daughter simply have the gtube inserted, or did she have another surgery at the same time? I am assuming that everything is healing really well too

If it was just the gtube, I don't think you are going to have any issues. The only real issue I can think about is if the tube (or button if she has one) comes out. They may not have trained you yet on how to put it back in so you may want to check with the DCL medical staff that they can reinsert it and get training if you haven't had it yet.

We haven't cruised yet, but I contacted DCL about having an extension cord in case DS is not sleeping near where the few outlets are (for the pump at night.)

I have a travel checklist for our supplies. I have an extra button, extensions, feeding bags, large syringes for feeding without the pump (always a good idea to have a backup to the pump, ours broke the first trip we took with it, thankfully they have fixed that problem now!) the pump power cord, creams, gauze, tape, etc etc etc. The check list is helpful too when you are packing to leave so you don't leave anything in the room.

Good luck and have fun on your trip!

 

[dclfun]

G-tube surgery isn't extensive/major surgery and you heal pretty quickly. For DCL you won't need a Dr's note at all. Do bring an extension cord ( or you can request to borrow one at Guest Services) so you can be sure the pump will reach to her bed. You might want to bring disposable pads for the bed in case of leakage. You'll need to bring your canned food- DCL can puree foods but you'll probably want to use what she's used to. If she's participating in the kid's clubs you'll want to let them know that she has the tube in case it does get dislodged and they need to call you asap or in case there are any restrictions on her activities. Hope you have a great cruise!---Kathy

 

[Vanvmom]

Thanks for all the advice. Her surgery is just to insert the gtube. She is only 22 months old, and the food we will be pumping into her is the same high calorie formula she drinks now. I'd forgotten all about the possibility of needing an extension cord for the pump. She will be sleeping in a portacrib, but had even that may have it's location limitations. Not sure if she will be using button yet, or if she will still have the long tube, but we will get training to reinsert it. Not sure if they will let her into the nursery due to the gtube, but not worried about that too much at this point.

 

[mdvlprof]

You'll be fine. DCL is great for kids with special needs.

 

[Mickey'snewestfan]

Thanks for all the advice. Her surgery is just to insert the gtube. She is only 22 months old, and the food we will be pumping into her is the same high calorie formula she drinks now. I'd forgotten all about the possibility of needing an extension cord for the pump. She will be sleeping in a portacrib, but had even that may have it's location limitations. Not sure if she will be using button yet, or if she will still have the long tube, but we will get training to reinsert it. Not sure if they will let her into the nursery due to the gtube, but not worried about that too much at this point.

If she's going to be starting with a PEG tube, then I'd ask to keep it until you're back from the trip. A PEG tube won't fall out and need to be reinserted, whereas a button always has that possibility. Although they'll train you on reinserting it, the first time is still the first time, and is pretty scary for the child and the parent. I would want to do it with an emergency room close by in case I needed help, not in the middle of the ocean with a shipboard doctor who may not have seen a toddler with a button in years.

We actually kept my son's PEG tube for the first year and a half, because I didn't want daycare to have to deal with the possibility of the button falling out. It was a great choice for us. Most other people choose to switch faster, but I'm glad we didn't.

Good luck!

 

[mayaflysmama]

We've done g-tube travel many times. Never a cruise though. I would make sure you have a couple extra days of formula for "just in case" moments. The first time we traveled with DD we "fed the bed" one night and needed an extra 12 hours of formula to make up for it and ended up needing to have it shipped (no so easy on a cruise). I also second the previous recommendation of taking along an extra tube in case it gets pulled out.

 

[Vanvmom]

THanks. I believe the surgeon said we would have the PEG for 6 weeks at least before she switched it to button. And we always travel with extra formula! What she drinks is prescription and is delivered to us, so could not just go buy it at the drugstore no matter where we were. Thanks for all the pearls of wisdom from those of you who've already done this.