Advice for Tube Feeding with a Pump

[MissingMickey]

Our son will be 5 mos when we go to Disney in 2 short weeks. He is currently ng tube fed by continuous pump for 11 hours at night. We plan to spend at least 2 or 3 nights out later than his normal bedtime and have rigged his pump/stroller so that he can be out and not miss pump time. Do any of you have any advice or words of wisdom in touring with a pump/apnea monitor? Really hoping we don't have any alarms. Will Security be ok with us - or should we have some kind of note (his ng tube stays in all the time)? Can we refrigerate formula at either First Aid or the Baby Care Center and treat it like a medicine? If not, do you recommend just a soft sided cooler?

He has 4 oral feeds a day that usually involve some entertainment. He has pretty serious oral aversions. Some feeds are just fine and dandy. Others are a real trial. We want to be as discreet as possible and hope not to bother others. If it gets too bad, we will just bolus and put a blanket over his stoller to be discreet.

We won't need a GAC (I don't think we should anyway) and we don't need a handicapped access room, so Disney wouldn't necessarily know of our son's issues. Do we need to notify our Disney resort when we check in that we will have medical equipment - in case of power outage, medical emergency, etc.?

We are Disney veterans and are anti-commando. BUT, this is our first trip with Squirt. Should be a lot of fun and also a _real_ learning experience.

 

[roseprincess]

Hi,
I am an RN, haven't worked in a few yrs. due to my kids are special needs/ disabled. I am a stay-at- home mom.

Anyways, I would like to help out answer some of your questions.
First, I would talk to your son's doctor/pediatrician about if there is a way to change the times of your son's tube feedings the nights you will be out late. Maybe start the feeding later in the evening, when you get to your resort and/or room. and then let the feeding run into the morning hrs. So, start the feeding later and then run the feeding later for the total 11hrs. duration.
Maybe your child's pediatrician can give permission for this so you don't have to lug around a pump all over the Disney parks. I know how heavy some of those pumps are.

If you can't get permission from your child's specialist/pediatrician to change the times of the tube feedings, then I would try to call Disney and ask if it's ok to bring a tube feeding pump into the parks. I don't know if there is a certain phone # to call on that other than the 1-407- WDisney number. You can call the main WDW phone # and ask the other questions about refrigerating the formula in the parks, etc.

As of your resort, I would definately let them know at check-in that you have medical equipment, so they can accomodate your son and the equipment and also so you can get a medical frig. in the room. The Disney resorts are more than willing to accomodate your son's needs. In fact, I just thought of it now that you should call the resort you are staying at and let reservations know of your son's medical equipment and that you will need a med frig. in the room.

I hope this helps. I'm hoping there are other nurses/doctors that read this board that may have more advice on this.
Best wishes on your trip.

 

[don8life]

Your ambitious! How about asking the doc if you could raise the rate on the pump overnite just for your vacation. (more cc's per hour)We did that with our one year old. i don't know if it is a good idea to do with a 5 month old though.

I would get a letter for the apnea machine only becasue people who have never seen this equipment can be intimidated by it(and it sure is loud, this way security and the front desk will know what it is if you have an alarm). At least if you have the letter, you have written proof.

I would notify Disney this way God forbid there is a power outage they will know of your needs.

Good Luck, you are a brave soul. That is alot of stuff to lug around!

Have a great time!
Irene

 

[SueM in MN]

You should contact this phone number:
WDW Guests with Disabilities 1- (407) 939-7807
or TTY 1- (407) 939-7670
This is the Special Needs Resort number and they deal with all special needs, not just the need for a wheelchair accessible room. They will be able to arrange a refrigerator for you and they would be the ones who would make sure your other needs get communicated to the front desk. (like the concerns about power outage).
There have been several threads on the Resort Board indicating that Disney is in the process of adding refrigerators to all the Deluxe and Moderate rooms. This might not be arranged in all the resorts by the time you get there, so you still want to arrange it with the number listed above.
I'm quite certain they don't store regular formula for people in the Baby Care area, but they might in First Aid because of your child's special needs. I do know that they will store medication in First Aid. Again, the number above should be able to help you.
For the oral feedings, you could go to Baby Care. They do have places where infants can be fed and then you would not need to worry about botherring other people.

 

[dclfun]

I travel 24/7 with a feeding pump and bag which hangs above my chair ( for gravity's sake). There's never been a concern with security, etc. about entering the parks with a pump or any of my other medical equipment. I don't know how your's is mounted on the stroller, but I had my medical supplier put a small "bar" on the side of my ventilator battery with screws and it acts just like a bar you would slide the pump on with an IV pole. It can also easily be removed. There are also pumps that are smaller than mine and hang on the back of a chair/stroller, and mine isn't heavy at all, so you might want to speak with the pump/tube feeding supplier to see if there's a lighter pump you can have ( don't know what you have right now). First aid is wonderful at all the parks and yes, they will store the formula for you and provide you with a private space, if you want one, to do the oral feeds. As for a power outage, if you keep the pump charged it's good for 24 hours but fortunately during the recent hurricanes there was no power outage at the resorts- you could always let the front desk know you're travelling with electricity-dependent medical equipment just so they'll be aware in case of any future "events" ( I hope we don't see Ivan!). Good luck to you and enjoy your trip. Kathy

 

[mcmom]

We have a cool little backpack feeding pump for my son that is about 4 inches wide and 4 inches tall and weighs only 4 lbs and it fits in a tiny little toddler size backpack that he can wear or sit beside him in a stroller. No one knows that it is a feeding pump. He loves wearing it. It is called Zeverx. Maybe you can rent for your trip smaller more portable equimpent then the traditional PET portable pump which is huge compared to ours.

We always get doctors notes for equipment just to be on the safe side when traveling just so if anyone has any questions about what all we have or in emergencies they know diagnoses, allergies, medicine, and equipment. It is better to be safe then sorry.

Have a good trip
Lori

 

[MissingMickey]

Thanks, everyone! Our pump is also tiny and has a carry bag large enough for a 1000ml bag (as if!). Looks like a very skinny bagpack purse. We had someone suggest using a LinkADoos link to hang the bag off the stroller bar so it would be higher than Aidan. Works great and allows me to run his tube through the side of the stroller where no one can really see it. The actual pump is tiny, too - about as big as my hand and fits in the front of our apnea monitor bag which is also smaller than older versions. It is considerably smaller than my diaper bag and fits nicely in our large stroller basket with room for the diaper bag still. Love our Aria stroller! Only 9lbs. Of course, it will be loaded up. The current plan is for our nights out to go back to the resort and get everything ready except for connecting him. We would head to the parks for dinner and then connect him in the parks and let him start bedtime in the stroller. So maybe we won't need to refrigerate. We will try icing his oral feeds in the tiny lil cooler bags you get at the hospital. He only takes 2 oz - so I still use the tiny Medela breast milk storage bottles. If the heat is too bad, I will ask at First Aid since we can't make up his formula from powder easily (has Polycose and safflower oil added).

We are staying at Saratoga Springs, so we have the refrigerator covered at the resort. With everything going on with Aidan, I didn't think I could do Disney without a fridge and a washer/dryer. Hubby insisted on being on property, and since it is a "business" trip - I wasn't about to argue. So we rented points.

I think our pump and apnea monitor batteries are only charged for 8-10 hours, but thankfully we have never had to find out. Definitely think we will call the Disability Line and give them the heads up. Thanks for all the info!

You aren't kidding about the alarms! Fortunately, we have only had false alarms since he has been home, but they scare me to death out of a dead sleep.

We have tried upping his hourly rate even 1 cc with disastrous results. Exorcist baby. His oral feeds are so small that he gets over half of his nutrition from the pump. I can't bolus more than about 7ccs without setting off the reflux, so we can't cut back and offer a bolus in place of a feed very easily. I use it more to supplement if he bottoms out on an oral feed before his minimum. He doesn't do well on the pump when he is awake either because he gets too playful and wiggly - with everything going in and the wiggles, it comes right back out. If he won't eat, I wait until naptime to set him up on the pump. It's sad to will your child not to be so darned happy so he won't throw up. They promise me he will grow out of it. But we have to keep his nutrition up so he can grow.

We have a repeat upper GI next week so the surgeon can evaluate us for a gtube and a nissan. Really hoping to get both - but right after our trip. Aidan was born with his liver and part of his stomach on the outside (large omphalocele). His stomach is also small and now compressed by putting it back in to a small abdominal cavity. His 1st surgery was at 18 hours old. His repair was completed at day 5. Otherwise, he is a very healthy, happy baby (as long as the bottle isn't in sight). So far, not even a cold.

 

[dclfun]

I'm glad Aidan is doing so well and is so happy- sounds like he has a very positive future! I have a PEG tube which is great although it frequently "leaks"....I don't think I could tolerate an ng tube. I have to have my pump on 24/7 as otherwise it's just too much in my stomach at one time but it's no big deal to me to have it or have to deal with it. We just got back from Saratoga Springs- lots of construction still in the area but we loved the decor. Hope you enjoy your stay. Kathy

 

[debbiemomto4]

Hi
We did our 2002 trip MAW trip with a g-tube but thankfully he was hooked up at night I rigged an IV pole with standing lamp and coat hanger. The pump didn't have to be too high so it worked. We did bolus in the park but Anthony (ds) was 2 1/2 yrs. old so he could more in. They will refrigerate formula at first aid and any meds. You can even go in there for any feedings you need to do or even just to get him out of the heat. My ds would dehydrate easily since he had a lot of swallowing issues after neck cancer. Good luck and have a great time.!

 

[MissingMickey]

Thank you, Kathy and Debbie. We are very blessed with Aidan's pediatric surgeon - he invented the first PEG back in the late 70's early 80's. Since the surgeon can't do the gtube endoscopically because of the anatomy/adhesions, Aidan will have a laparatomy - riskier, but we think getting rid of the ng tube will be very helpful in reducing the reflux, oral aversions and risk of aspiration.

I had hoped First Aid could help with the formula if we need it, but I know they can't take every baby's formula - so I didn't know if there was a blanket policy of no food, only meds.

All About Aidan - http://webpages.charter.net/the_wilsons/

 

[SueM in MN]

Thanks for sharing your website. Your Aidan is a real cutie.
Your website is very nice too. I looked at all the pictures (I'm a nurse, so I can look at nearly everything), but I liked the way you marked the "safe" pictures to look at.

 

[roseprincess]

Missing Mickey:

Thanks for posting your website, also. It was nice to see the pictures (safe and non-safe pictures) as well as your family background and Aidan's updates. Glad he is doing so much better.
Glad to see you and your husband have a lot of family support as well as church support. Thanks again for sharing about Aidan.
Have a great WDW trip!

Rosemarie

 

[MissingMickey]

We had a wonderful trip - ah, the joys of no appointments or home health care visits for 10 days. With my husband there, I could even take uninterrupted showers - amazing! Thank you so much for your advice and words of encouragement.

We finally gave up on oral feeds and tube fed all week. It's like I have a new son. He gained 9 oz and threw up less. He is so much happier and by not aggravating him for 4-5 hours a day, we were able to make tons of progress on his pt/ot skills. Both my OT and PT thought they were at the wrong house this week. Haven't seen my speech therapist this week yet, so I haven't broken the news to her - but I am comfortable that our decision is the right one for our family. We just need to slow down and stop pushing because we are reinforcing the oral aversions. It won't be the quick fix the NICU hoped for. So, we get the gtube on the 19th - yeah!

Because of the tube feeding, we did request a GAC to treat the stroller as a wheelchair so that we could continue with feeds. We had everything rigged on the stroller. Guest Services took great care of us, and we tried not to abuse the privilege only using it when necessary.

We actually did very few rides, but the GAC worked well for things like the Muppets and the Animation walk-thru/movie in MGM since we knew we would spend a lot of time there. It certainly gave me a new appreciation for viewing options for wheelchair access. At Clyde & Seamore at SeaWorld, the wheelchair access seating had serious visibility issues. Gained a whole new perspective which was quite humbling.

We actually didn't go into the parks 4 days of our trip. I was so proud of my husband for taking it easy. I actually felt rested when I came home from Disney - a first!

I think I am going to check into the Zeverx or a pump that allows for interval feedings and has a better transport setup since it looks like we will be living with our pump for some time now.

Rosemarie and Sue - thank you for your kind words. It's hard to be cute with a big yellow tube hanging out of your nose, but somehow Aidan manages. We are a little biased, though. Hoping to post pictures from the trip to the website sometime soon.

 

[SueM in MN]

Glad to hear your trip went well. Thanks for the long report.

Ps. The speech therapist should have lots of other things you can do besides oral feeds to help with his oral aversion. Sometimes the best thing to do is take a step back and be in a holding pattern for a while. Good luck on his continued progress.