Feeding tubes with no Aid helper.... what do I do??

[SandrA9810]

Ok, so I asked for some help on the regular board and they said to come over here.

First of all, my brother is 27 now, and he's been pretty sick since Christmas. Me and Kari want to bring him to Disney for a day, as we don't really have the time or money to do it much longer than that.
Kari works for Disney, so we've got the passes covered. I'd like to bring some one along, but his aids are kinda questionable about whether they can make it through a day at disney. On top of that, it would mean getting a rental van for transporting every one because our ford ranger can only fit 4. Thankfully we finally got our new apartment, so we can go back to our place for the night before returning my mom and brother at thier homes.

My brother is on a feeding tube, and no one has been taught how to use it. And truthfully I'm a little scared about it, and that's why I'd want to bring the aid. But my aunt says plenty of parents do it themselves, and that it really shouldn't be too hard. I know there are registered nurses in the park at the first aid center that could probably help me out to the point I dont mess up horribly, but I'm sure I'll have to do a couple at home or on the road.


How hard is it really??
And are there any tips for transfering him in and out of rides. His favorite is the speedway. And he used to have the strength to get in and out of it, but he can't do it any more. I was thinking of using a blanket under him and some one grab each side so he'd be supported all around. I don't know how much he weighs, but he's like only 4'6" feet tall and probably less than a 100 pounds now. The other fun part is going to be carrying him to our second floor apartment. I'm not happy about being there, but Kari doesn't want to wait a week to get the first floor. Plus she has this entire weekend off for my birthday, so I get to be hauling this around for my birthday... woop-t-do, i'm not happy about it.

I'd really like for this to work for him, because it seems once a month he ends up in the hospital with phnemounia.

 

[peemagg]

A blanket might be a good way of transfering him on rides that he needs to transfer to. A lot of rides he can just stay in his wheelchair. A question came to mind is can he stand at all? If he can that will make it much easier for transfers. I would suggest one person stand in front of him and put their arms around under the arms and lift him to his feet that way. Then carefully pivot him into the seat. If you have to totally lift him then I would try the 2 person carry. Some rides unfortunately will be out of the question for him if he can't be transfered safetly.

As far as the feeding tubes go I am not sure. I have seen many hooked up, but I have not done it previously.

 

[XYSRUS]

Using the feeding tube isn't hard at all. Beforehand ask his nurse/aide for instructions and write everything down. Practice. Look at youtube videos-not the most excellent form of instructions but you'll get an idea of what's involved. Maybe you could get a phone number to contact someone if you get in a jam. People all over do tube feeds themselves for relatives etc. Good luck.

 

[SueM in MN]

I've got a few questions before I can help you.

First of all, what park are you planning to go to?
I'm assuming since you mentioned the Speedway that you are probably talking about MK at Disney World, but just want to make sure you are not talking about Disneyland.

Can he stand at all? Can he support his weight if you hold him up?
Can he hold onto you? Can he grab onto things to help you pull him out?
Can he understand directions if you need him to help you by leaning a certain way or something?

If he has PCA, someone must be supervising them. That company or organization would have someone who can teach you. Are you somewhere that you could meet with them? They should also have some written information for you so that you don't have to take a lot of notes. If you have a video camera or a digital camera that can take video, take movies or pictures that show the process. It will be easier for you to remember if you have pictures that show doing it on your brother.

Getting him up to a 2nd floor apartment will be difficult. Have you considered renting a hotel room for him and your mom?

The idea of lifting him with a blanket sounds like it might work, but I'm not sure if it will work in actual practice. We lift our youngest daughter into ride cars and it is not easy and is tiring to do, even for people like us who are used to it. The blanket idea works well for lifting someone from one surface to anther surface that is about the same height where you have a clear space around you. Many of the ride cars are very low with not much space to plant your feet.
I'd suggest really concentrating on things he could do without leaving the wheelchair. If there are a couple of other ones you are thinking of, let us know which you are thinking of so we can give you some advice on how to manage it.

 

[mechurchlady]

You want to help him so muc but you need to slow down. First of all you should wait for the first floor apartment as you could hurt him while manhandling him up a flight of stairs especially someone with a feeding tube. I do not know what is wrong with him but even a healthy person being drug up a flight of stairs could get hurt big time.

Sue is a registered nurse and has an adult daughter with cerebral palsey. Therefore I strongly suggest you slow down and listen to her. You also need to ask a lot of questions as not all disabilities and limitations are alike. Also you have to take into consideration his health issues.

You so want to take him on a certain ride but how would you feel is you was manhandled and bounced into a ride vehicle? I would suggest you talk to BillSears who is a paraplegic and has been in a chair many years as he told me that sometimes the expenditure of energy and the getting in and out of a ride is not worth the ride itself. I love Astro Orbitors but I cannot get out of the ride vehicle so it is not worth the embarassment and the pain of trying to get out of the ride vehicle.

Let him lead you on your trip and save up for the trip so that you can have the best trip.

 

[bopper]

Why do the aids not think THEY can make it through a day at Disney? If they can't, can your brother? Can one of them come and sit when necessary but help you w/ medical/feeding issues? Could the aids get in for free too?

 

[LavenderPeach]

I don't know anything about transferring to the rides but I do know about feeding tubes. DS3 has had one his whole life and we've always done it ourselves. It really isn't hard at all. Maybe you can get an appointment with a GI nurse so you can learn how to do it yourself. There should be someone either at your local hospital or at your brother's GI clinic who can train you in what to do. Or can you have an aide show you? The more you do it the easier it will be. Good luck and hope you have a great trip!

 

[SandrA9810]

My brother has syndrome G and he's never been able to walk, he also can't talk, but he knows what you're saying to him. The muscles in his legs won't stretch out far enough to allow him to balance himself. So he always crawled. But he's been bedridden since December. The nurses take him out of bed and put him in his wheelchair for walks, rides in the car, or just sitting in the living room.

And yes, I can get 3 people in on Kari's maingate, so there's no cost for the aid's ticket. But like I said, if some one else comes along, that would mean a different car. And that's not something you can just ask some one to borrow for a couple of days. And there's very few dollars to spend here. We just moved into the apartment, and had to pay a full months deposit, so we've borrowed quite a bit of money from Kari's parent's to pay for things in the past week. And there were several reasons why we had to take the second floor so soon.

My mom get SS checks, and that's what we'll be using, and sure it'd be easy to spend the whole thing on this. But she still needs some of it herself. (BTW, she lives with my sister, so she has no monthly required expenses).

And I know what my brother can handle. Plus he'll be sitting all day in his chair. But part of the reason I don't think the aid will be able to handle it is because of the physical stregnth needed for lifting him in and out of ride vehicles and all the walking. And there's absolutely no way I would take my brother for a day at Disney and not take him on the Speedway (yes at Disney World), it's his FAVORITE thing to do, and a couple trips ago when he was his normal self, my mom would get him on it, and they would allow him 2 or 3 trips around before getting out. My mom would then get him outside the ride and started towards something different, and before she knew it, he was turning his wheelchair around and headed back to it. He loves cars and going for rides.

And again, the hotel room would be more expense. And I wouldn't allow for them to stay in a cheap little place along 192. He's had so many bouts of phnemonia that I wouldn't want anything to irritate his lungs. I'd much rather have them stay at a Disney resort. And if an aid is with us, that means having a seperate room for her, so either a villa or two hotel rooms.

My aunt thinks it's not fair to get the aid in the park and say see ya at 12 at the first aid center, or not pay for her meals. My mom also would like to take us to the Crystal Palace, and as well for my birthday. I'd like that to stay as a family meal with the four of us. But my aunt says that's not fair if she's there for the care for lewie and not invited to our dinner. And suggested that the three of us go for my birthday and leave my brother with the aid. But what's the point of going to a character dining without him?? He's the one that would enjoy seeing Pooh.

It just sounds much easier and doable for the four of us, rather than having some one else along. And if I decide to, we can go back for a second or third day, but if the aid is with us, we have to be on her schedule of how long she can be gone.

 

[Cheshire Figment]

My opinion is if you have a regular Aide (or a Nanny) and will be going anywhere on a family vacation that person is part of the family and generally should be treated as such. They will be expected to perform their usual services during that period, as well as being given time off to "do their own thing" just as they would at home. And it is the responsibility of the family to provide the transportation, lodging and tickets just as you do when at home, as well as most meals.

 

[wendylovesdisney]

Hi - I am a nurse and just want to tell you that feeding tubes are easy-peasy. Don't be scared of them at all. Just ask whomever does his usual care to demonstrate to you what needs to be done. Really, it's a piece of cake.

As far as transferring him if you are not used to it, that may be a different story.

 

[SandrA9810]

So we did the trip the past week. Without an aid.

Ohh and btw, he lives in a group home. So it's not like we take care of the aid's needs. Plus the government takes care of his medical needs, so there's no out of pocket money from the family for his care.

it was very frustrating to see him like that, he's like completly shut down inside. And he doesn't even act the same. like when I spent time with him at Christmas he seemed really groggy and tired, but he stil acted like himself, played blocks with me.

And all his muscles are tightening up, so everything is curled up. Only when he's sleeping or just waking up, he's relaxed enough to let his arms and fingers be stretched out.

Transfering him in and out of his wheelchair was quite an experience. It took two of us to do it, but his shoulders are so far forward and his arms so tight to his side it was hard getting my arms under to pick him up.

I decided to go all the way on the trip, we stayed 3 nights at pop, and one day at the magic kindgdom. And he got to go two laps around the speedway, and 3 times non-stop on pooh. it was raining like mad so the parks were quiet and practiclly walk on all rides. We did the dining plan, so it was more about seeing the characters than anything else. Had dinner at chef mickey's and lunch at crystal palace.

It cost way more than it should have, but partly because of staying the third night that was not planned added like an extra 100$ to the total.

I'd do it again, but definatly for a lot longer than a couple of days. Driving round trip twice in one week to Miami and back was very tiring. Plus it did more damage to my car than I expected (there's a few things that need replacement and the extra 1,000 miles didn't help it)

 

[SandrA9810]

And the feeding tube thing got easier as it went on. But it's hard trying to do it every 3 hours, and the lady that told us how to do everything apparently told us wrong times. That we found out after we got back.

He's also figured out how to stop the feeding tube. Which happened the first night. We barely managed to get the first flush down. So i just gave him the medicine and let it be at that. I wasn't going to force him if he wasn't happy.

It makes me wonder if he's mad at us for not taking care of him. My mom has been the one to take care of him all of his life, and now she spends about a week with him once a month or so when I can get the money to drive her down there.

I wishi my mom would let me move him up here so at least he's close to some body. And I can pay attention to his medical care. Because I don't think he's getting what he needs where he is.

 

[Gisele]

I am sorry for your situation. I have an 8 y/o niece, who cannot walk nor talk, nor go to the restroom. I just finished giving her, her 1:30 pm water.
She is a beautiful little girl, who should be able to enjoy life like the average child.
The feeding tubes are really quite easy. For as long as it is in proper place, and the person that is being fed, or is being given water, does not pull or yank it out, or the syringe, it is good. That is interesting that your brother has found a way not to have his water, and shakes go down. Sometimes, the tube will become clogged. If you are using the Keto Cal shakes, if you blend them instead of only shaking them, then it makes it much easier for the tubes not to become clogged. Also, what I like to do is, in the event of cloggege, or it taking a time to finish just enough of X, I will take the plunger that comes in the large plastic syringe, and only plunge as far as is necessary. For if it is done for longer from what is needed, then air can be pushed into the tummy, and gas can result. So I make it a real point to only dispense said plunger for the length and duration that is needed. If there is just a tad bit of water left be it from her time for water, or the flush after her shake, that is OK, if you do not plunge that, I just finish at that point.
It sounds like you and your brother had a nice time at WDW. I am glad that things worked out for everyone. I hope that you and your family have an awesome time as well on your next visit.
I wish that things could be designed better and more efficiently for one that is disabled, and for the people that might be giving aid to such individual.

 

[SueM in MN]

Glad to hear that you at least got to go and it sounds like he had a good experience (although maybe not what you expected).
Sorry to hear that his living situation may not be so good. Does he have a social worker or a case worker from his county that may help with the concerns you have?

 

[SandrA9810]

my mom thinks every one is doing such a great job... she really doesn't ever form an opinion of her own. she just goes along with whatever is done. Estremely frustrating, especially since I turned out so opinionated.

I don't like his social worker, who's the one that found this caregiver, Shae. She used to send people to the house for daily babysitting and care while my mom worked. And she never sent any one that I liked, that I felt did a good job for him. And I still don't like any of the caregivers she has working for her.

It's a losing battle against my family. And in order to get him a support coordinator in Orlando, I have to go through a request change thru his current one. So even if I just brought him up here there's red tape that stretches as long as the distance.


And he stops the feeding tube by tightening his stomach muscles... like if you were to do a sit up. And the only time I used the syringe was for the flushes, because it was easier to fill it from the bottle, rather than trying to pour water from a gallon jug into the syringe. For feedings I'd take out the plunger and just pour it into the syringe.


My goal for the next trip is to stay at a deluxe resort where everything is in the main building. The contemp or poly sound good since most of our time will be at MK. And then it won't be such a hassle getting on and off busses and walking to the other end of the resort for our room. Monorails are much easier to deal with. Then it'll make it easier to go back to the room for feeding and relaxing. That way I don't feel like we're wasting 3 hrs of the day. We don't deal with our car because of how small it is, and how long it takes to get him in and out of the wheelchair. and the busses drop off a lot closer than any parking.

 

[SueM in MN]

It's a losing battle against my family. And in order to get him a support coordinator in Orlando, I have to go through a request change thru his current one. So even if I just brought him up here there's red tape that stretches as long as the distance.

Yes, basically once you move you start all over again on waiting lists unless you are in the same county/area. And, some have waiting lists that are years long.

My goal for the next trip is to stay at a deluxe resort where everything is in the main building. The contemp or poly sound good since most of our time will be at MK. And then it won't be such a hassle getting on and off busses and walking to the other end of the resort for our room. Monorails are much easier to deal with. Then it'll make it easier to go back to the room for feeding and relaxing. That way I don't feel like we're wasting 3 hrs of the day. We don't deal with our car because of how small it is, and how long it takes to get him in and out of the wheelchair. and the busses drop off a lot closer than any parking.

I would suggest Contemporary because you can chose to take the monorail or there is a nice walking path that is about a 10 minute walk to MK.