G-tube in disney parks and cruise

[sejejoemmiev]

We are going on a Disney Cruise in Feb 2007 and spending 5 days in the parks as well. My 8 month old daughter is 100% G-tube fed. Hopefully by the time our trip comes around she will have made some progress taking something orally as well. She will be 1 1/2 when we go so things might be a whole lot different or most likely things will be going pretty much the same. She has a MIc-Key button and Uses a Zevex pump for overnight feeds. I am not worried about the overnight part. She also gets 3-4 bolus feeds during the day that take 1 1/2 hours to complete. If we go any faster than that she throws up!! I think it will be easier on the cruise because you are sitting around alot and we can take her back to the room easily to feed her there if we need to. I am worried about how this will work in the parks though. Packing everything we will need for the day and completing the feedings at the park seems like an overwhelming ordeal. Has anyone experienced this? Any Tips on what works and what doesn't? Also we really wanted to go to Palo on the cruise. Will the nursery watch her on the boat? If we pre fed her and her button was closed up in her clothes they wouldn't even notice she had a feeding tube. Unless they changed her diaper! Is this something they would do if they didn't even need to touch it? It would only be 2 hours and we are close by if they need us. Does anyone know if they deal with children that have Special needs at all? A couples massage would be nice too................. I can dream cant I? Any help would be greatly appreciated. I am already worrying about all the details about how this will work!

 

[eternaldisneyfan]

I am not sure if you're bolus feeding through a syringe or through the pump. I get 24/7 feeds with the Flexiflo pump. We had no problem at DL. Brought the food in a small cooler. I would suggest using a pump in the park . Set the rate to correlate to the amount in the bag. Like 75 mls would go in over an hour and a half at the rate of 50 mls an hour.

Good luck!

 

[sejejoemmiev]

We use a pump for the bolus feeds. She gets 140 ml total at a rate of 95ml/hr which is about an hour and a half. We do this 3-4 times per day. Then overnight she is continous at 45 ml / hr. for 12 hours (8pm-8am) She can not tolerate syringe bolus feedings. It is too much volume too fast and she throws up. You found bolus feedings in the park not too much of a big deal? We unhook her extension set to her Mic-Key after feeds and rinse it out. We then prime the line with formula before hooking her up for her next feed. We use one bag for every 24 hours and have to rinse and reuse. How did you work that or do you do it different? Formula is only good hanging for a maximum of 4 hours so we just couldn't fill the bag for the day. At least in Feb. it wont be Hot so the formula should be O.k. for 4 hours. They don't have a problem with us bringing a cooler in for her formula and supplies, Right? Thanks for your input. We are finally on a routine doing this at home and it seems a little scary to be doing this elsewhere.

 

[eternaldisneyfan]

I have never done bolus feeds. I have gastroperesis so all my food goes in my jejunum. We carried a small cooler with those ice packs that get put in lunches. Maybe you could put the cooler on the stroller-we used a bungee cord. I didn't have a problem. The First Aid stations also have fridges where you could store the food.

Christamae

 

[Mickey'snewestfan]

We use a pump for the bolus feeds. She gets 140 ml total at a rate of 95ml/hr which is about an hour and a half. We do this 3-4 times per day. Then overnight she is continous at 45 ml / hr. for 12 hours (8pm-8am) She can not tolerate syringe bolus feedings. It is too much volume too fast and she throws up. You found bolus feedings in the park not too much of a big deal? We unhook her extension set to her Mic-Key after feeds and rinse it out. We then prime the line with formula before hooking her up for her next feed. We use one bag for every 24 hours and have to rinse and reuse. How did you work that or do you do it different? Formula is only good hanging for a maximum of 4 hours so we just couldn't fill the bag for the day. At least in Feb. it wont be Hot so the formula should be O.k. for 4 hours. They don't have a problem with us bringing a cooler in for her formula and supplies, Right? Thanks for your input. We are finally on a routine doing this at home and it seems a little scary to be doing this elsewhere.

What kind of formula are you using? Are you sure about the 4 hour figure? The reason why I ask is that we were specifically told when DS had his g-tube (4 1/2 years ago) that if you used sterile formula (not the kind you mix yourself from powder) that it could hang in a new bag for 24 hours. We live in DC and it's very hot here in the summers and DS's nutritionist specifically told us to not add ice packs etc . . . to the pump because the cold formula would be harder to tolerate.

DS never got above 60 cc's per hour so he was fed 18-20 hours a day. We would fill the bag with the amount he took in 24 hours and then run the pump when ever he had a chance -- in his stroller, when he was sleeping, when he was doing a quiet activity until we got all the hours in.

I wouldn't guarantee that it's going to be the same with a different kind of formula but that's what we were told -- we used Nutramigen until his 1st birthday and then Peptamen Jr. until he was 2 and stopped using the pump except for water.

 

[sejejoemmiev]

What kind of formula are you using? Are you sure about the 4 hour figure? The reason why I ask is that we were specifically told when DS had his g-tube (4 1/2 years ago) that if you used sterile formula (not the kind you mix yourself from powder) that it could hang in a new bag for 24 hours. We live in DC and it's very hot here in the summers and DS's nutritionist specifically told us to not add ice packs etc . . . to the pump because the cold formula would be harder to tolerate.

DS never got above 60 cc's per hour so he was fed 18-20 hours a day. We would fill the bag with the amount he took in 24 hours and then run the pump when ever he had a chance -- in his stroller, when he was sleeping, when he was doing a quiet activity until we got all the hours in.

I wouldn't guarantee that it's going to be the same with a different kind of formula but that's what we were told -- we used Nutramigen until his 1st birthday and then Peptamen Jr. until he was 2 and stopped using the pump except for water.

We use Enfamil with Iron (Powder) and mix it to 28 calories with added polycose(carb). WE were instructed that it was good for only 4 hours at room temp. We mix up a whole days worth in a container and store it in the fridge. We then just poor in one feedings worth directly from the fridge into the bag and hook her to her pump. We were never given any alternatives to longer lasting formula. Maybe because she was bottle fed for the first 2-3 months and that formula is what she was used to? I would have to bring a cooler with a days worth already mixed and just poor it in per feeding as we do at home. Does the first aid station have a sink where I can rinse out her bag? A bathroom just seems so unsanitary. Maybe my supply company can send me extra bags for my trip so I can just throw them out after one use. That would make it easier. Probably a insurance reason why they would not be able to. 30 bags per month is all we get. I wonder if they would let you buy extra out of pocket? Wouldn't hurt to try! What happened after age 2 with your son? Did he learn to eat by mouth? This is my biggest fear and frustration. She has no reason why she cant eat. She choses not to at this point because it is foreign to her. At birth she was too weak due to her heart condition and low muscle tone to eat enough to gain weight. She was able to eat enough to stay alive though. She should take something by mouth now and we can supplement her for the extra calories for good growth.
She clenches her mouth shut, turns her head and pushes the spoon away!!!She loves to watch everyone else eat though! While she is staring at you eat she pretend chews. If you then offer her what you are having she turns her head away! What was the process with your son? I would love any first hand experience. Also any g-tube babies on the CRUISE????????? Will the nursery keep them for a short while if they have been already fed? She is just like any other baby otherwise. Her heart is stable at this time and because of the low muscle tone a little developmentally delayed, but that is it. Just a stubborn non eater!!

 

[dclfun]

For the cruise you should call DCL and request the medical information form and to speak with the special services coordinator about your daughter's special needs and if she can be accomodated in the nursery. It is stated clearly on all their literature that they "regret that children requiring special medical attention or 1:1 care from staff cannot be accomodated" either in children's programming or in the nursery but perhaps because the staff would not be feeding her it might be a different story. I'm sure they'll try to accomodate her if at all possible. BTW I also use tube feeding but am an adult- mine can be used for 24 hours also without refrigeration ( Pulmocare or Nutravent). I'd think that continuous pump feeding might work best at the parks but your physician may want the bolus feedings instead. At any rate the first aid centers at each park are cool, clean, and have attentive staff. ---Kathy

 

[riu girl]

I would love any first hand experience. QUOTE]

I also had a non-eater. As an infant, DD was low tone, mild developmental delay, sensory issues, failure to thrive etc. etc.

When DD was your DDs age (8 months) the only time she would eat is if one parent jumped around and played muscial instruments, acted silly etc. Then the other parent could sneak in a couple mouthfuls of baby food.

By age 2/3 DD was also diagnosed as bulimic and infantile aneroxia. By this time we had a nurse coming to our house once per week as well as more then one behavioural therapist, OT, PT and speech. The paed. told us that we would have to try a feeding tube since she was losing weight, still failure to thrive, global delays, dehydrated/ill all the time (in hospital a lot on IV). I asked if there was anything else we could try first.

DD was put on 2 mg twice a day of cyproheptadine. It is an anti-histamine and a side of effect is that it makes you very HUNGRY!!!

For DD, this was a miracle drug. It made her so hungry she seemed to get over her sensory/behavioural eating issues and FINALLY started eating. She gained 3-4 pounds in about 3 weeks and I took her right off the drug then. The doctor wanted her on the drug for 3 months but I declined. Since coming off the drug DD has NOT stopped eating. She is now 9, is healthy and weighs about 85 pounds. All of her issues started improving immensely once she started eating.

At 9 she is in Grade 3 and is an A/B student. Her only current diagnoses are mild ADHD, low muscle tone and very high anxiety. I guess for some people these are still major issues, but for us it is NOTHING compared to DDs issues earlier in her life. We just feel so blessed.

Perhaps you could consider speaking to your doctor about this medication.

The only negative side effect from this drug (for DD anyway) is that it made DD very tired. The dr. told us to offset this by offering her extra juice. This helped.

 

[MommytoMJM]

I too have a kiddo on a pump (Zevex) who cannot bolous at all or take any water by mouth, we have an IV pole on her wheelchair now, but before that we had her backpack that is specifically designed for the Zevex, it uses 500 cc bags and houses the pump underneath and we just hung the backpack with the pump and formula from the handle of her wheelchair. If you have questions about how it worked I'd be happy to chat with you about it, by email, PM, IM or whatever. We go to the parks twice a week, so we have gotten pretty adept at navigating with the pump.

 

[Mickey'snewestfan]

What happened after age 2 with your son? Did he learn to eat by mouth? This is my biggest fear and frustration. She has no reason why she cant eat. She choses not to at this point because it is foreign to her. At birth she was too weak due to her heart condition and low muscle tone to eat enough to gain weight. She was able to eat enough to stay alive though. She should take something by mouth now and we can supplement her for the extra calories for good growth.
She clenches her mouth shut, turns her head and pushes the spoon away!!!She loves to watch everyone else eat though! While she is staring at you eat she pretend chews. If you then offer her what you are having she turns her head away! What was the process with your son? I would love any first hand experience. Also any g-tube babies on the CRUISE????????? Will the nursery keep them for a short while if they have been already fed? She is just like any other baby otherwise. Her heart is stable at this time and because of the low muscle tone a little developmentally delayed, but that is it. Just a stubborn non eater!![/QUOTE]

Sorry it took me so long to get back to you -- Yes, DS began to eat by mouth. With my son it was never an issue of not wanting to eat -- he simply couldn't do it safely. His upper airway and vocal chords were so weak (mostly caused by severe reflux) that he would allow the formula to slip into his lungs. After putting him on continous feeds for a while (which controlled the reflux and allowed him time to heal and outgrow his problems) we very slowly and gradually reintroduced different textures of food -- by 2 he could/would eat enough calories and variety that we weaned from the tube except for water -- once he could drink which was about 2 1/2 we weaned him the rest of the way.

DS is now 7 -- big for his age (he was tiny when he was younger) and doing great. He's in first grade, and right in the middle of the class academically, he has lots of friends, plays a few sports, and has a real interest in drama. He still has a little bit of asthma, and we just found out he needs speech therapy for vocal nodules (like callouses on his vocal chords -- caused by the reflux and asthma most likely). You'd never believe he was ever sick.

As far as getting him to eat in the beginning -- he never had any problems with oral aversions, and in fact mouthed everything he could get his hands on, to the point that it was a safety problem -- probably because he missed the stimulation of eating. The pacifier was a godsend in that I could put it in his mouth if I really needed him to stop putting other things there (wood chips at the playground for example -- he chewed a million of those). One problem we did have was helping him figure out hunger cues. When we were weaning him, if I waited too long to offer food he'd be too upset to eat -- it was like he was telling me -- "Look, I've got these strange uncomfortable feelings in my stomach, and you want me to eat now? Can't you see I'm not feeling well?" I of course know that the strange feeling was hunger, but he didn't get the connection. A few times I'd feed him a piece of candy or some other "treat" and once the edge was off his hunger he'd be willing to try other food. The other thing was that if he decided to power struggle about food (like all toddlers do) I had to know that he'd win -- because he didn't feel hunger I couldn't just wait it out knowing that eventually he'd get hungry and eat. So as a little guy he pretty much got to eat whatever he wanted, when he wanted.

Finally, about the cruise -- I'd go in very matter of factly and say "This is my daughter. She's one and a half and she likes to . . . . " Give them a chance to interact with your daughter before you add "By the way, if you change her diaper you might notice that she has a "button" on her stomach. She has trouble eating enough calories so we use that to feed her. However, you won't need to do anything with it. If you have any question feel free to call/page me, but otherwise she's just a typical toddler. I'd also put a "onesie" or some other 1 piece article of clothing on her so that no other toddler can pull at it. I'm an early childhood special educator and I see that the more specific and calm parents can be the easier it is for teachers to feel calm and capable about handling the kids. There's no reason the staff at the child care program can't handle a child with a tube if it's not feeding time, and having a calm, matter of fact attitude about it will help you help them realize it.

Good luck!

 

[dclfun]

For the cruise it's best if you let them know in advance via the medical information form and if needed by speaking with the special services coordinator so you know their policies and limitations upfront. As long as no medical treatment is needed in the nursery then I can't see why your daughter can't participate just because she has the button. As for the pump,instead of using a huge IV pole which is more noticeable and gets in the way, my w/c vendor took a piece of pvc pipe and attached it to the side of my chair. The pump slides on it and the bag hangs from an extension on my headrest. This way there are no tangles and the whole world isn't viewing my tube feeding. You've got a little one but once the child or adult is older, it is better IMO to be more discreet- thus avoiding stares and questions from everyone. ---Kathy

 

[MommytoMJM]

Hmmm, you just made me think Kathy...I wonder if MJ's pump could be attached somewhere else on her wheelchair....

I'm going to have Andrew get her chair out of the van so I can experiment....

 

[MissingMickey]

Another plug for cyproheptadine - though many doctors seem scared of it or think it doesn't work. Our ped GI wouldn't prescribe it, but our ped nutrition md did. So glad! Works wonders for my DS who is 25 months old. Major birth defect affecting his digestive tract caused him to be FTT and he was continuous fed when we went to Disney last when he was 6 months old. It has been a slow process, but he is doing great! Eats orally during the day and supplemented with 30 cal formula (10 oz) at night. Another vote for Zevex, too.

You can be very discreet in the stroller with a gtube. Run the extensions out her pants leg and hang the pump travel bag (or get a small backpack - Kmart has small Mickey ones that would probably fit) off the stroller using a linkadoo or a carabiner clip. For more privacy, throw a blanket over the pump. Most folks will never notice.

Didn't realize the DCL had nursery available. We were waiting until DS is pottytrained to try a cruise b/c we thought that was the requirement. Interesting. Will have to check that out.

And buffets are great places to sample variety of tastes/textures that your DD might not get at home.

 

[sejejoemmiev]

All this information has been great. It is so nice when you can ask someone a question who knows what you are talking about. I knew the answer to my question about the nursery on DCL would most likely be to speak to someone in advance in special services and I was hoping there was a way around it. She sounds scarier than she is to someone who has never been around a G-tube before. I figured if I spoke to someone beforehand the answer would probably be NO! I liked the idea of just bringing her and gently springing it on them in a it's not a big deal kind of way. I'm afraid of that response too. I guess there is no way in knowing until I ask. I'll expect the worse and be pleasantly surprised if they say Yes. Thanks for all the info and if anyone else has their experience to include than keep it coming, please. Jessica

 

[dclfun]

Jessica- the person you will speak to or who will receive your med form at dcl is a nurse so she will know exactly what you are talking about and not be "afraid" of your daughter or her needs. She will probably not be able to guarantee the nursery usage ( since no one on land can guarantee anything on the ship- it's up to the ship staff) but there are many MAW children who sail on dcl and other disabled guests who have used a PEG tube, etc. so it's not something rare. Again, knowing what I know about the ship as long as your daughter doesn't require medical attention in the nursery there should be no reason they won't take her and you've already said she'll be fed beforehand. I don't foresee a problem. To Bonnie...I'm sure your med provider can attach the pump on MJ"s chair somewhere else. Does it still fit in a backpack or does it need to be higher? Mine is gravity related so I hang the bag of "food" on an extension on my headrest and then the pump is mounted on the side of my chair down on the battery tray. The pvc is attached then to the vent battery. I know you've seen it but might not remember those details. This way you won't have a pole sticking up and getting in the way or having people stare at MJ except for the fact that she's adorable! ---Kathy

 

[Mickey'snewestfan]

Jessica- the person you will speak to or who will receive your med form at dcl is a nurse so she will know exactly what you are talking about and not be "afraid" of your daughter or her needs.

Unfortunately I have to disagree with you on this one. During the time when DS had his g-tube, the people who routinely got the most freaked out by it were ALWAYS the nurses -- not that all nurses got freaked out, but that everyone who got severely freaked out was a nurse. For example:

1) When DS initially got his g-tube placed he was on the "respiratory floor" because he lung problems were considered primary -- the nurses there weren't used to new g-tubes because they were usually placed on the GI floor so they would come in and handle it like it was a bomb waiting to explode. Also if I asked ANYTHING they'd tell me they didn't know and to be safe not to do it.

2) When DS was in "special needs" daycare the nurse there kept making up rules about g-tube feedings. One rule was that DS (who was an active toddler on a continous drip) could not be fed unless he was sitting still, and could not be "restrained" in any way while feeding -- not in a high chair, not in a stroller, not by being cuddled in a teacher's lap etc . . . In fact, even if he was being "restrained" (e.g. his class was going on a walk and he was strapped into the buggy with the other kids) they couldn't feed him because of this rule. I finally, after much talking convinced them to feed him when he was asleep at nap time, but never made any headway on the other issues.

3) When DS was little I called the "nurse hotline" a few times for my insurance. For example I called once because he was teething, the Dr. told me to give him tylenol and when I got home (after hours) I realized I had forgotten to ask how much. So rather than disturb my Dr. I called the 24 hour nurse hotline to ask the dosage. The nurse asked me a set of questions including "how much has he been eating". I explained the situation and her response was that I should take him to the emergency room IMMEDIATELY (for teething mind you!). Over time I learned that no matter why I called they would find out he didn't eat by mouth and try to send him to the emergency room.

If I were the OP and wanted to convince the childcare center on the ship to take my child, I'd want to be the first and only one to talk to them. I knew my child best, including his needs, and I would want to explain exactly what I wanted -- e.g. just leave the button alone. If for some reason it falls out, page me, otherwise just don't touch it and keep it covered with a T-shirt or onesie unless you're changing his diaper. Also, don't feed him anything except what I leave with you for him to eat.

 

[dclfun]

I'm sorry you had so much trouble with nurses in the past. I do know that there are many people, both children and adults ( myself included) that have sailed on DCL with a g-tube so it's not something they are unfamiliar with. I personally wouldn't want to wait until I boarded the ship, worrying and wondering about whether my child would be accepted into the nursery ..so I'd contact someone in advance who is in charge of medical services onboard- but this is just what *I* would do and not everyone feels the same way. At the very least she should be able to be told "absolutely not" ( so she can then make a decision about whether she even wants this vacation) or more likely, "when you're onboard, go to the nursery and speak with the counselors", or " you'll be fine since you're not expecting any medical treatment or special care in the nursery". If I got the last two responses I'd be okay...the first and I would hesitate to spend money on a vacation where I couldn't have my expectations met. ---Kathy

 

[sully7]

Two years ago my sister took her DS age 5 to WDW. He had a Gtube then. She just brought a cooler and did his feedings just like at home. He sat in the stroller and they did things that didn't require him moving around! She said it wasn't much more difficult that at home!

Good luck and remember to have fun!

 

[Disbug]

Hi, my DD5 also has a G-tube. We use single use 250 ml bags which are disposable after every feed but can be reused up to 24 hours. Those little suckers are pretty expensive! However, we do have to rinse out the right angle tube which connects to the Button. No real problems using the bathroom sink to rinse out her tube. Especially using one of the restaurants bathrooms. I try to use hot water when available. The wet tube gets placed in a ziplok bag for the next feeding. We try to feed her when we stop to eat lunch or dinner at one of the restaurants. It usually takes about an hour or 2.

Is there any way you could bring single serving cans of the Enfamil w/Iron instead of having to mix the powder? That might be more convenient... We also have a caribiner clamp that we hang the bag from on the back of her wheelchair. The pump tucks into her diaper bag which hangs on the back. Everything is nice and tidy and no one can see she is being fed.

I hope everything works out well for your family on the crusie. We wish you all the best!