Back pack feeding systems

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Back pack feeding systems

by Marmaduke on Tue Jan 02, 2018 07:12 PM

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Hello, I’m finally going to take the plunge and take a vacation. I am still on a feeding tube so need suggestions on what others on here have used while away from home extended periods of time. I’m not sure but I remember someone talking about using the back pack feeding systems and it worked great. Perhaps it was Susan D. Hoping if she sees this, she will respond. I would love to hear what has worked for others on here too. It will be a 15 day trip so I need to plan ahead and get something other than my gravity tube which I will have to go somewhere private every time I eat, which doesn’t sound too convenient. Looking forward for some much needed advise. Thanks, Donna

RE: Back pack feeding systems

by Loves2Fly on Tue Jan 02, 2018 11:42 PM

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Hi Donna,

No help on the backpack, but here are a few things we found helpful. 

Get a letter explaining you have a feeding tube from Doc for travel. Some want to see it and some not, but it eliminated them patting hubby down or asking to see it. We put a copy in checked nutrition, in carry on bag, plus another on person.

Call TSA (if flying) ahead of time and they will walk through security with you. They will usually let you keep your water bottle with you. They will also let you bring nutrition. Many airports have little "pod" types of rooms for breastfeeding that are clean and quiet. Sometimes in the executive lounges, you can find a privacy office type of room as well to eat.

Carry empty water bottles (if a particular kind works for you). If you do have to dump the bottle, you can refill once through security. My hubby needs a certain kind to help him swallow, so that was an issue for us. Carry on several 3 oz bottles of water in a spritzer bottle. (fits limits). Hubby carries several clean syringes as well, plus a zip lock bag for used ones. 

Ship nutrition ahead if possible. It is a pain carrying it all for any extended time. we have sent some ahead, had it delivered to family, to a hotel, etc. that worked well.

Driving, we just packed it, but temperatures have made it a pain to bring in to keep from freezing, etc. 

We just let people we were visiting know that hubby would need some time at points of the day, and he went back to hotel room.  He doesn't want to eat through his tube in front of people. When we were places that was difficult, we would park in a far corner of a parking lot,put the sun shade up, and he would feed himself, often while I was in the restaurant getting a bite myself. We once ended up in a cemetery as it was the only place we could find privacy and quiet for 30 minutes! We also have a dog, and if she is with us, he excuses himself "to check on the dog" or "walk the dog" and people don't question it. He also uses the dog as an excuse if he is just worn out and needs to rest. Although, people probably wonder about the dog pampering he does LOL!

Most people don't mind seeng it, and many are actually interested in how it works, but he rarely eats in front of anyone. I do watch to be sure he doesn't miss eating. He doesn't feel hunger any more, so it is easy for him to miss all together if we don't plan it in. He really wants privacy and some don't really respect that.  

Another issue is making plans with people that aren't good at timing. We met with family that would start with a 9 am plan, and by the time it happened, it was 1 pm, which threw everything off. With another family member, I discretely let them know when hubby would need time, and family member always had "something to do" right at that time, and encouraged us to meet later. 

So, a lot depends on how you are travelling, where, what is available, who you are with, etc. We tried a single overnight a couple of hours away for the first time, then a 4 day trip 6 hours away, then a week - then 2 - by car, then finally a flight across country.  

What we had to figure out was things like where to go to eat, etc. We like B&Bs, and many will let you eat in your room, so I had my breakfast delivered and we ate together. Also, I found it easier to stay in hotels that offered breakfast, as I could fill my plate and take it back to the room. I could also get things for him as well - milk, etc. that he sometimes suppliments with (for flavors). We also have done take-out dinners or room service in hotel rooms to eat together and not take time for eating separately while sitting with the other. Other times, he eats first, then we go out to eat so we can take our time and his stomach will settle before going to bed.

In my opinion, flying is hardest. You have travel time to airport, not a lot of options at airport for privacy and cleanliness, a flight, plus travel to destination. This can make a long day between eating. Plus, you have to prepare if your nutrition gets lost in flight. Hubby carries 2-3 days with him in carry-on. Fall back is over the counter stuff from the grocery store.

Good luck and have a great vacation!

RE: Back pack feeding systems

by Sdurnell on Wed Jan 03, 2018 07:25 AM

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Hi Donna.

I flew across the country with a backpack pump and then we drove home, from OH to WA by way of AZ (in August!).  The pump was a godsend.  By that point after my treatment I was not shy about feeding, and wore it everywhere, but not everyone would need to.  The most annoying thing about flying was that they made me open a can of formula at the security checkpoint, and it was wasted.  If I'd been thinking, I would have dumped it into the bag for the pump.  I had a letter from a doctor but no one wanted to see it.

I know a lot of people who travel with kids who have the same neurological condition my daughter does, and who use tube feeding all the time.  Most have an easy time, but some have horror stories about getting their wheelchair-bound children and all their parahenalia through security.  So anything can happen, but I hope it doesn't!

We shipped feed bags and formula ahead to my mother-in-law, and made sure it was enough for the drive home.  I carried extra cans with me as well.  We don't ever check bags, but it would be a lot easier if we had done so.

I always did very slow feeds, so was hooked up most of the time.  If you can tolerate faster ones, you won't have to be.  There were a few times when plans changed and I was separated from my backpack, but I really didn't feel any hunger and was more worried about water than anything.  So if you can bolus water, as I could, that likely won't be a problem.

I can see that letting the formula get cold this time of year could really be a problem.  I once used a can fresh from its storage on the front porch (in March), and it was a rude shock!  You will want to keep some at room temperature at all times.

It was not really a problem to travel with it.  I could even swim with it.  I took this trip with my husband and kids, but later I flew to AZ by myself and did just fine then too.  After that I got the throat dillations and kissed the tube goodbye.

I hope you are going somewhere nice and warm!

Susan

RE: Back pack feeding systems

by Marmaduke on Wed Jan 03, 2018 03:04 PM

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Susan: So glad to get your response. We are taking a 15 day Alaskan Tour the end of the summer. We will be flying from Ohio to Seattle. I was interested in maybe getting a back pack type feeding system and wondered what type you had. The responses I am getting will be of great help in planning this trip. I am scheduled to get my tube replaced in a couple days as the supplement is pouring out around the tube on my stomach as fast as I put it in. It’s been a year and time for the change. I plan on discussing the back pack system with my surgeon at the time. Looking forward to your response. Thank you, Donna

RE: Back pack feeding systems

by Marmaduke on Wed Jan 03, 2018 03:42 PM

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Lives2fly: Thank you so much for all the great tips. They will help tremendously. I am somewhat nervous about the whole trip actually. We are going on an Alaskan adventure the of the summer for 15 days. We will be flying from Ohio to Anchorage. Btw, I hate to fly! Lol your advise is invaluable to me. I’m looking into a back pack system for the trip not sure about how it works and hope to find out more before the trip. I use the gravity tube system and do not use a syringe at all. I’m like your husband in that I don’t usually get hungry and forget to eat at times. I’ll get the letter from my doctor and try calling TSA regarding my situation. I guess we will be shipping my supplement on ahead. I’m going to take some with me also. It will certainly be a challenge for sure. Like everyone who has “walked through the fire” so to speak on here, it’s nothing we can’t handle. I’ll be referring to your advise many times I’m sure before my trip. God Bless you and your husband. Thank you again, Donna

RE: Back pack feeding systems

by Sdurnell on Thu Jan 04, 2018 07:49 AM

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Donna,

We are going to Alaska this summer too, but in July.  We drive to Seattle (we are in Eastern WA), then take the train to Vancouver B.C. and cruise to Alaska.  We'll spend some time in Denali then come home.  My mother-in-law and sister-in-law are also coming with us from Ohio.  Must be the year to do those things.

If you have a balloon-type tube, it is really easy to replace.  I had one done after a few months because the end connection on my first one was so crappy.  A nurse at my home health company did it in just a few minutes.  The second time was harder, because I tripped over the dog and stepped on the line while it was connected to the pole, and it pulled out.  (I don't recommend this way!)  We live in a very rural area, but on a Friday night not even the hospitals in Spokane, 2 hours away, would replace it.  I was going to have to go in each day for IV fluids and some nutrition and then have it surgically replaced on Monday.  So we just decided to try the ER at the small local hospital, and miraculously the doctor there reamed on that hole with one thing and another until he finally got the new one (I had a spare) in.  He was my hero.  And my daughter had fainted and hit her head when she saw the hole with no tube in it, so they gave her a warm blanket and kept checking her eyes for signs of a concussion, all free of charge.

More than you needed/wanted to know!

I had a kangaroo back pack pump.  I cannot tell you how much it improved my life.  I was able to go back to substitute teaching with it, too.  The kids were fascinated.

If you have not used a pump you will probably want to get one enough in advance of your trip to get used to it.  I think you said you are on a drip?  If you get your equipment through insurance it might take awhile, too, and you may have to justify why you need it.  So if you are talking to your doctor soon that will be good.

Just be aware when you fly that it doesn't really matter what it says on the TSA web site, or what someone at the agency might tell you.  When you get there they will do what they will do, and not every airport may have the same protocol, even though that doesn't make any sense and they will tell you otherwise.  So allow lots of time each time you go through screening.

All the best--maybe we can compare notes at the end of the summer!

Susan

RE: Back pack feeding systems

by Marmaduke on Thu Jan 04, 2018 05:39 PM

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Thanks Susan. Interesting your Ohio family is going too. I chose the later part of August to celebrate my 70th. Yay! I’ll discuss the Kangaroo pump with my doc tomorrow. My special needs daughter worries about mom choking when she eats so I try not to eat even a little in front of her now. They worry so about mom. This will be my second time getting my tube replaced. Pretty much know the drill, but not liking it one bit. Last year my surgeon stood over me before removing the old tube,and grinned and said “don’t worry Donna, this is gonna hurt you more than me”! He’s a laugh a minute that guy. Thanks again Susan, you are always such a help and very informative. Enjoy Alaska! Our first trip there. Take care, Donna

RE: Back pack feeding systems

by Sdurnell on Thu Jan 04, 2018 11:45 PM

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That's a great way to celebrate a milestone birthday, and we have more reason than many to party on about such a day.  I hope you have a wonderful time.  My birthday is this month, though, so Alaska will have to wait--the cold is bad enough here!  This is more of a South America time of year!

I took my last tube out myself, with the permission of my Registered Dietitian, who was in charge of my feeding.  It made me feel powerful!

My special needs daughter was I'm sure worried all through the ordeal of my cancer experience, but she did develop more independence, getting up on her own, fixing her own lunch, and getting herself off to school by herself.  And fortunately she is good at spending time by herself.  Silver linings.

Susan

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