DL in a week...eekk need some help from DL vets who have tips for a tube fed person

[scrappinbear78]

I apologize in advance, but this is pretty long...reality is finally setting in and I am stressing.

OK, so I had taken some time away from the boards to focus on making sure this trip is going to happen. I have posted over here a few times, but things have actually gotten worse with me. Right now as it stands, we leave in 1 week....the only problem is I have not been given the go ahead by my doctors. I know I had asked on here before about hospitals in the area for fear that I would have to visit one down there....well, I have to have a hospital lined up for me to go to when I am down there. Talk about adding stress to a trip that should be a magical trip. I have struggled all year trying to stay out of the hospital and have been very unsuccessful. I just got home from yet another hospital stay. Was there for 6 days and have been doing worse and worse since I have been released. I am unable to even get water in me, so the likelihood of me making another trip to the ER before we live is almost guaranteed. I was also hoping that my health would get better so that I could at least spend some of the time walking around with my family, but have been told by my doctor that I am not allowed to. I have been told I must use the ECV the whole trip otherwise I am putting my life in jeopardy. Because I can't get water in me and haven't had nutrition in almost 2 weeks, it is going to be an extremely long trip down there. So, I ask for prayers that my body will cooperate and start tolerating at least water. I do not want to get down there and it be warmer then I am used to which makes it harder to stay hydrated...then add not being able to even tolerate fluids to keep me hydrated. On top of it, I am not even able to tolerate jello, soup broth, or anything. The smells of food are actually causing me to get sick...oh boy I am going to be surrounded by amazing smells and some wonderful food. Really starting to get a little scared. We have been planning this trip for 2 years and so afraid that my health is going to make this trip one that isn't as enjoyable as we though it would be. Also because of the increased hospital stays this year...especially within the last 2 months...has used money that we had set aside for Disneyland.

So, for the reason for this post...no it wasn't just to vent. Since I am unable to tolerate anything right now, what are some pointers from those who have experienced the park either as a parent of a tube fed child who demands a lot more attention and obviously can't eat the food that is all around you....or if you are an adult who is dependent on tube feeds...how do you handle the trip? I was so hoping that I could at least drink broth or eat jell-o or something, but that isn't an option right now. Also, since a lot of the money that we put aside for Disneyland has been used due to my medical things...how can we go and have a good time but on a small budget? We will be at DL from Dec. 21 through the 26. We have a total of about $1800 to spend on food and souvenirs. There will be 4 people who are able to eat. There are 2 kids and 2 adults...plus me. What are the MUST DO's. Keep in mind that there are 2 out of the 3 adults who will be in ECV's, the other adult probably should be in an ECV because of his legs, but refuses and can only walk for a few minutes very slowly before he has to take a break (stubborn husband feels that he will be perfectly fine walking even though he can't even walk in a grocery store to go shopping....oh well can't make him realize that he will need assistance). The two kids are older, but I still want to be there with them at all times and watch them enjoying things as well. My girls are 12 and 10. So, my biggest concern are things that you typically have to "dash" to in order to be guaranteed that you will be able to enjoy in the festivities....the big one that comes to my mind is the handmade Candy Canes...is this something that people with disabilities usually get the short end of the stick and can't participate in during the busy times because everyone else can "dash" to the location way faster then you can? Don't want my kids to miss out on this...it is already going to be a huge chore just for me to have the strength to even enjoy my time down there....they have to miss out on so much because of my illness and want to make this as magical as I can. Upsets me that I can't be the "normal" parent and "dash" to the different areas and guarantee that they will be able to enjoy the things. Any other tips would be very helpful. I know that we will have plenty of time in the parks to do most of the things so I am not as worried about that, I just want to make sure that the family is able to enjoy all the things that there are to be had. I want to make sure that we have enough money for them to be able to enjoy some of the foods around the park, making sure that they are not going hungry either while we are there because we don't have what we thought we would have set aside for food. Also, since this is the kids' Christmas present and all of their gifts are from DL, that we are getting them enough as far as souvenirs are concerned. I know it won't be as extravagant as I had originally hoped, but I know people go on really strict incomes all the time. This is my first trip ever and of course my kids' first trip. My husband and Dad have both been before but it has been years and years. Any pointers would be much appreciated....anything from how you deal with tube feeds in the park, how you manage energy levels, how to make sure that the magical atmosphere doesn't put such an adrenalin rush on you that you forget about your health and find yourself in a lot of problems later on in the stay, and any pointers on being a disabled parent trying to make this the best possible trip for her able bodied children.

I am sure I am stressing way more than I need to, but really need to hear from those who have experience and could offer some insight and suggestions.

 

[alizesmom]

To answer your basic question, there is no difference in tube feeds at home vs in the parks. Bring your feeds with you and just "eat" when you are supposed to. You can do it in public or go to first aid if you want privacy. A lot depends on if you use a NG, G or GJ tube. Also whether or not you do continuous or bolus feeds. Karen

 

[scrappinbear78]

To answer your questions I have a j-tube. As for the feeds, I am on continuous. Because I can not tolerate feeds set at what I should be having them at...I have to be on the feeds 24-7. I am lucky if I am able to tolerate a can of formula a day, which gives me at most 300 calories. My pump doesn't like to really keep a charge and will only run for about 4 hours before I have to charge it again. Are there places throughout the park where I can plug the pump in and recharge it?

 

[HowdyHeidi]

My son is tube fed (4 boluses a day and overnight drip) and we didn't run into any problems at the park. Actually the bag checkers often even knew what the pump was.

I imagine if you ask at Guest Services they will know of a place for you to charge your pump for a time.

The only thing that was different than home is that our ice packs didn't ever freeze in the resort fridge. I tend to refrigerate the cans of formula at night, and then set up the bag cold in the morning with an ice pack to keep it cold throughout the day.

I'd say just take it slow and enjoy what you are able to fit in. I think the amount of money you mentioned should be more than enough for a family your size so long as you don't go crazy. We tended to eat breakfast, a big lunch and then skipped dinner and just had a snack or two in the evening and that was fine for us and we skipped the dinner crowd...

Have a great trip!

 

[goofieslonglostsis]

Am I reading this right? You are not able to even keep your fluid intake where it should be? And are so close to the planned trip? Unless something drastically hugely changes on that department, I'ld not even consider going. It's worrysome enough as it is, let alone if you are going to add in doing Disney.

And ehm.... if you are lucky you can take in 300 cals per day? Another huge red flag, IMHO. Even when you would do nothing other than sleep and/or lie in bed, you'ld be burning large amounts more than that mere intake. Doing Disney will drastically increase the cals you'll be burning, even when not walking. Paying attention to the kids, all the things you can see, things that are different, transferring for rides, transportation, you name it. Heck, even being in a different hotelroom that the bedroom you have at home consumes more energy. Your current basic level will come into play also, but with a "if all goes well" intake of 300 cals, I'ld personally stay on the safe side of things and rather make sure the risks aren't too high and/or the price you might have to pay is too high in the end.

Sure, the kids are beyond excitement. So are you. You could desperately use a break. I get it. Heck, had to cancel my sept/oct DCL/WDW combination trip (for a total of a months worth mousetime) as a result of....... messing in this department. I had my PEG placed in july of this year after which my fluids and foodintake were a huge problem. Took over 3 weeks before I was able to upkeep my intake on my own. Came too close to never seeing Disney again, so to speak. Was back home half of August, yet had to cancel the trip. Stil no way near safe. Heck, I'm at WDW as I type this and I'm still not in that safe a situation nutrionalwise as it takes a long time to recoup from the damage done over the summer and before I started first using tubefeedings. But, by now at least it is no longer a situation of acute life or death in case even just "that" happens.

Don't want to be a Debby Downer, but SERIOUSLY discuss this with your treatment team. If the fluids aren't turning around 360, I wouldn't even consider it. Don't know if you're aware of it, but some risks of dehydration actually don't show themselves until you are properly hydrated again, like certain deficiencies. Some of them can in themselves be life theathening if the deficiency is bad enough. Let's say that would magically be superb from now on with no real results showing up in your bloodwork after you are back up to par. Still seriously talk it over with a focus on your need for nutrition and the increase of burning your body will go through because of this trip. If you are still relatively new to this, there might even be no real way to tell how big of an influence that will be for you. There are standard numbers they can work with, but some will find they react by needing lots more of nutrition than the "norm" would show.

Hopefully you can do the trip and you'll all enjoy. But please make sure it is an option to go. If the risk turns out to be too high, rescheduling or not tagging along might be the better option for all of you.


If it al does go as planned (or for the rescheduled moment); talk to the supplier of your pump. Don't know the options within the US system, but we have the option to get a second pump for the duration of the trip for free, just in case something were to happen with our daily pump. That would be a perfect way to tackle that battery having died on you (which is basically what it's probably done with such a short duration time on such a low speed). Heck, take it beyond that. Have somebody dive into this and make sure if you can't get another pump as this one obviously seems to have outlived it's batteries life. If that is not an option, look into buying one (second hand if need be) yourself. There are some great pumps out there and some rotten ones, it can make a lot of difference which one you have.

See if you can have your cans shipped directly to your hotel. If so; preferable a day before you arrive and call to check it did arrive (if not, you have time to do some repair work). Always have some on you during the travel, enough to keep you going for 2 days more if need be (you never know what might happen and which such a low intake, you can not afford to loose even one more cal).

With the ECV it shouldn't be a thing, but if you end up using a wheelchair; be on the look out for safety belts in for instances busses when you stay put. Depending on the precise location of your PEJ and how the safety belt is positioned, it can sometimes run right across or around the tube site and irritate a bit or get stuck a bit in turns and stuff. A simple putting hand in between safety belt and belly will do the trick to stop this (moving the belt sometimes only helps for a short while if the belt moves again).

A bit less Disney focussed; have you got a good nutritionist/dietician? Don't know if you're on it yet, but seeing how low your intake is it might be a good move to change your formula to one that has a higher amount of calories per volume of formula. I for instance use one that has 2 calories per mililiter, which means I only have to pump 1 liter for 2000 calories instead of 2 liters for 2000 calories (1 on 1 is the standard most are started on).

Want loads more info, tips and experiences? Haven't got the link on my netbook here but Oley is great.Ah, found it. https://www.inspire.com/groups/oley-foundation/ . All kinds of info and tips about all kinds of tube feedings. Also they've got a travel section and a board where you can interact with others. Even got a part on that board where you can exchange and buy all kinds of supplies from another, which might be a good option to look for an affordable "new" pump or battery in case your supplier doesn't want to help out.

If you get the time; definately check them out! Great info and knowledge on there. Might very well be that you find options on there that you haven't tried yet and your doc might not even know about or have considered that might be an option for you. Anything from medication, type of tube and materials to living tips that might make a huge difference.

Get better soon!

 

[eternaldisneyfan]

sounds like you need tpn-iv nutrition. I also have a gj tube. my pump lasts all day so no advice...

 

[scrappinbear78]

goofie....thank you so much for the information. I have a doctors appointment tomorrow morning and will be going over EVERYTHING. I know that the trip may not even happen, but I do have to worry about my health first. I will definatly look at the Oley site, even though I have been aware of them didn't even think about going there for information. I am not new to the whole tube feeds and dehydration issues...I have been dealing with Gastroparesis since 2006, but this year has been the worst year for me by far. I will also call my supplier to see if they can provide me with a second pump for the trip.

As for the TPN...I have been on it 5 different times this year already and each and every time I have gotten a yeast infection in my bloodstream. They are very very reluctant to put me back on it again. They are too scared of the long term effects it can have on me, so they are trying to hold off. I am also such a hard stick for any type of a line that they know that it is going to be a huge challenge just to get a central line in me again to do TPN.

Thank you so much for the advice and I will definatley be taking everything in and talking to my medical team tomorrow. I told my kids tonight that there is a chance we wouldn't be able to go and all they did was cry and make me have the guilt trip....they kept saying can't you just hold off and take care of it when we get back. I know they are kids, but it really makes me wonder if I can't just make it happen....but I know that there are still chances of things getting even worse.

 

[ZehnJahren]

Thank you so much for the advice and I will definatley be taking everything in and talking to my medical team tomorrow. I told my kids tonight that there is a chance we wouldn't be able to go and all they did was cry and make me have the guilt trip....they kept saying can't you just hold off and take care of it when we get back. I know they are kids, but it really makes me wonder if I can't just make it happen....but I know that there are still chances of things getting even worse.

I'm very sorry to hear about your issues; I don't know anything about the subject, but I sometimes go through all the different boards and read random threads just because they're interesting.

However, this one stopped me in my tracks. Are you seriously saying that you are extremely sick, not taking in enough calories to do much more than breathe, worried about missing an important vacation, but yet your children cried and gave you a guilt trip when you told them there was a chance you couldn't go????

If you can't go, you can't go - you are ill and your children obviously have a difficult but necessary lesson to learn about priorities. If you push yourself to go and then die on the trip due to your insistence on going, what type of guilt do you think they might have to live with? What extra costs to your family with ensue? You definitely need to be 10000% sure that the doctors say you can go and will be fine with a few changes to your itinerary - otherwise, do not put your life in danger (and add more medical costs) because your kids cried that they didn't get to go to Disneyland.

Get yourself taken care of first; I wish you the very, very best of luck.

 

[eternaldisneyfan]

I hear ya about the hard sticks and infections. i've had ports, piccs, & now a broviac and multiple blood infections. it wasn't until I was treated like a neutropenic patient that my infections stopped. I also have severe gastroperesis. Push for that j-tube & tpn-sometimes doctors need a nudge. good luck!

 

[goofieslonglostsis]

I'm very sorry to hear about your issues; I don't know anything about the subject, but I sometimes go through all the different boards and read random threads just because they're interesting.

However, this one stopped me in my tracks. Are you seriously saying that you are extremely sick, not taking in enough calories to do much more than breathe, worried about missing an important vacation, but yet your children cried and gave you a guilt trip when you told them there was a chance you couldn't go????

If you can't go, you can't go - you are ill and your children obviously have a difficult but necessary lesson to learn about priorities. If you push yourself to go and then die on the trip due to your insistence on going, what type of guilt do you think they might have to live with? What extra costs to your family with ensue? You definitely need to be 10000% sure that the doctors say you can go and will be fine with a few changes to your itinerary - otherwise, do not put your life in danger (and add more medical costs) because your kids cried that they didn't get to go to Disneyland.

Get yourself taken care of first; I wish you the very, very best of luck.

Ditto. I think you've kinda ran into something many -if not most?- moms run into at some moment. Being so focussed on the kids that they forget priority number one; themselves. If you do not put yourself first, you can never ever be the best mom you have in you. You need to put yourself first.Taking care of you means you can better take care of others around you. Loving yourself means you've got space to love others around you.

If your health is to put a ranch into this trip (and let's face it; it will most likely looking at the facts and how close you're to it), so be it. Not peachy, not nice, something all can be bummed out about for a moment but nothing to feel guilty about or if they have the age; make another person feel guilty about. Take this discussion one step further; explain on their level that it's not "just" something that can be put of and why it needs to go first for all of you. Even very young ones can be given info on their level and learn to understand.


As far as long term effects go; be your own advocate. You need to be with this subject. Arm yourself with info, facts and numbers. Better yet; have somebody do that for you as it will consume way too much desperate needed cals to do so yourself. With that become your own advocate team. They're afraid of long term effects? Peachy, but when one has a good long term onlook as it is. What is your situation right now? Your body eating itself up in a gutrenching speed, you're not even holding down fluids. If this goes on long enough, you will become critical fast enough. How far are they planning on letting this go? How far are YOU willing to let it go? Unfortunately in this subject you do really need to be your own expert and advocate to get what is needed in too many cases. Sounds like you might be in one. It is your body, your life. You have a big say in your treatment and goals within that. Put that on the table, get all of the involved persons focussed on a plan YOU are fine with. Sometimes that means moving on onto other teammembers but remember it is YOUR life this is about. Your life as a person, a wife, a mom and so many other things. You owe it to yourself to get the best and fitting care out there. Don't settle for anything less. (this is one subject why Oley is so great. Way too many people have to fight such a battle which makes it the place to find both info and support)


Take care! And remember; you first. Just dream about it; after this hardship and all of the fighting once you get settled into the right type of nutrition for you, how different things will be. How much more fun it would be to have a trip to DL just around the corner. What you could be doing with all that energy. Spoil yourself for now with some love, chocolate and dream about what could become. Wouldn't that be a much more magical trip for all of you?

 

[goofieslonglostsis]

How are you doing, Scrappin?

 

[bopper]

Talk to the girls and tell them that is okay to be upset, that you are upset too. But that if you went, there would probably be a day or more that you would be in the hospital and then they would be sitting around the hospital instead of being at WDW...that you would rather go when you know that you all can spend time at the parks.