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Special Needs Sunday: Enteral Feeding Pump

29 Jun

This is my first post in a hopefully ongoing series that will publish on Sundays. I’m calling it “Special Needs Sunday” and will include posts with helpful information and reviews about experiences we’ve had with Jenna and products we’ve used. Today starts the series with a review of our feeding pump.

We came home from the hospital with a Kangaroo pump mounted on an IV pole. It was relatively large and cumbersome, but we didn’t think that much about it because we thought it would only be a brief time that she would require it, and it worked fine for an infant, but was cumbersome for travel of any sort. As she got older and we learned that it would be necessary to continue feeding her by g-tube, we started fretting bit about how an active toddler would be able to move around and develop motor skills while attached to an IV pole. My wonderful mom emailed me with a link for a company called Zevex that manufactures a super-small and super-light enteral feeding pump called the EnteraLite Infinity.

It’s dimensions are 1.95” H x 5.65” W x 4.05” D and it weighs just over 14.4 oz. A super-mini backpack is available, which means that no more IV pole is necessary. Jenna can wear the pump in her backpack and feed on-the-go. The pump operates in any position, which means if Jenna does a somersault or hangs upside down from the couch, the pump keeps going. Another liberating feature is its 24-hour battery. We still mount the pump to the IV pole for her overnight feeding and plug the pump in for recharging at that point. It works perfectly. It’s very simple to program and easy to understand. The programming key pad consists of nine simple buttons.

We initially went through a medical supply company to rent the pump, because this was the only way our insurance would cover the cost. Two years later, we officially have rented long enough to own it. Insanely (we’ve found that insanity reigns when it comes to insurance issues) the insurance company paid enough to purchase three pumps in the time we were renting-to-own. They apparently have no problem with that. Sigh. But I digress. We have had minor service issues that were always dealt with promptly and professionally by either the medical supply company or Zevex directly. I have emailed questions to a Zevex customer service rep who has always responded immediately.

This pump has made it remarkably easy and discreet for us to travel anywhere with Jenna while feeding her. We’ve been to zoos, restaurants, parks, playdates, etc., and have gone on walks, out visiting – – you name it! Whatever “normal” families and kids do, we are now free to do too. It has also made car and plane travel a breeze, and most people don’t even know that she’s being fed through a tube. We’ve had strangers comment that her backpack is “so cute” without seeming to realize it’s purpose. As she gets bigger, there are 2 additional sizes that will fit her accurately.

My recommendation to other parents would be: Don’t even mess around with anything else. This pump is incredible and makes life so much easier for you and your little one. If they try to tell you that the Kangaroo Joey pump is “the same,” it’s not. It’s significantly larger and heavier and requires a larger backpack. I’ve seen and held them, and they don’t even compare to the light and compact Infinity. Enteral feeding is complicated enough without adding in struggles with the pump or further lifestyle restrictions. Feel free to contact me via comments or email if you have further questions.

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53 responses to “Special Needs Sunday: Enteral Feeding Pump

  1. Z

    June 29, 2008 at 1:31 pm

    I have to agree with the “so cute” comments on that backpack! Adorable!

    And I’m glad you’ve found something that works so well for (the collective) you! While I don’t need this information at the moment, I will certainly keep it in mind should I ever be in this situation…

    (PS. I stopped by from AllMediocre!)

     
  2. psychmamma

    June 29, 2008 at 2:04 pm

    Thanks Z!

     
  3. anymommy

    June 29, 2008 at 3:53 pm

    Wow. I am amazed by the grace and matter of factness of parents who deal with these things because they have to do it for their little ones. She’s adorable in that backpack! I would never suspect a feeding tube if I saw a child wearing one of those.

     
  4. Amy/grrlTravels

    July 10, 2008 at 5:15 pm

    I recently had a mom tell me about the pump I had to have and of course I’ve forgotten them name. We have a Kangaroo right now and the thing we hate about it is that we have to get up every night to turn it off when our daughter is finished with her feed. Can you tell me if this pump shuts off automatically when the feed is finished?

     
  5. psychmamma

    July 10, 2008 at 6:31 pm

    Amy –

    Yep – it sure does. That’s one of the things we love. We can set the rate that the formula is delivered and then the dose amount to administer. You can also turn an “alarm” on or off for when it’s finished. We turn the alarm off, so when the dose is finished in the night, it quietly shuts itself off without waking anyone. Heaven.

    Feel free to email me at psychmamma@hotmail.com if you have other questions!

     
  6. Ciera Granger

    February 4, 2009 at 1:08 am

    I’m soooo happy to have stumbled on your site. We need that pump!!

     
  7. dme2410

    March 9, 2009 at 3:17 pm

    I have to disagree with the fact that the Kangaroo Joey is significantly larger. It is about an inch wider and weights a couple of ounces more. It however can flush water in addition to feed and has a lock to keep children from messing with the pump. Our children very much enjoy this pump.

     
  8. psychmamma

    March 9, 2009 at 3:38 pm

    To be clear: Here are the specs for the Zevex pump:

    Dimensions: 4.05″ x 5.65″ x 1.95″
    Weight: .9 lbs

    Here are the specs for the Joey:

    Dimensions: 4.1″ x 5.1″ x 3.6″
    Weight: 1.7 lbs

    Jenna is very tiny/petite and often needs to wear/carry her pump. ANY added weight or bulk makes a difference. I think the weight difference is the biggest one we noticed with the Joey. My review is based on our personal experience. Certainly, each child and family will have differing priorities and preferences. I’m glad that you found something that works for you and your children.

    I would also point out that the Zevex has a longer battery life, is more accurate, CAN also flush water, accommodates smaller (more portable) bags & feeding sets, uses a smaller backpack, and that we’ve never had a problem with Jenna messing with the pump. The (maybe 2?) times that she HAS pushed a button, it simply alarmed to tell us it has been messed with and we fixed it. There’s no way that she could go through the series of steps required to actually reprogram it.

     
  9. Cheryl

    March 23, 2009 at 10:38 am

    We are looking into a backpack for Graycie right now. She came home from the hospital with the kangaroo pack. She has CF and is now 10 months old and is crawling everywhere. Knocking the IV pole over and pulling the tubing so tight that the alarms are always going off. We are looking into getting a Super Mini, however, do you know how many ML’s it holds? We do around 700/800ml at night. I love that it looks just like a regular backpack on your daughter and no one even knows she is feeding. How cute!!!

     
  10. Britnee

    June 11, 2009 at 12:57 pm

    Based on your posts as well as several others sites and reviews I’ve read, I agree that the EnteraLite Infinity is also the way to go for our family. My son does not walk so when we are out I would put the backpack on his wheelchair. Here are my questions: 1)About how long is the tubing? and 2)How does the tubing come out of the bag? Do you just leave it unzipped enough to reach the button? Thank you so much for your insightful review of your experience. This definitely helped confirm my leaning toward this pump. Be blessed!

     
  11. Mary

    July 25, 2009 at 1:05 am

    Hi,
    I’m so glad I found your sight. Not only did I at one time have a child on a feeding pump, but now I find myself on one. I have been searching for a portable one-I was given a Joey, but it is bulky and I have had problems with the tubing staying connected even with adapters. I finally googled, “portable enteral pumps for children” and found the Infinity Enteralite and also your site. I appreciated the comparison and recommendation. I also appreciated your comments about buying the pump. I have been on mine for 5 years and no one has mentioned I finally spent enough to have purchased one. Is it a hassel if the pump quits working or does the company get you a new one quickly (if you own it)? You a truly doing a wonderful thing having this site for parents facing these issues. When our little one had so many issues in the late 80’s and 90’s the internet did not exsist. Keep up the good work I know you must be a blessing to so many AND to me. NOW the hard work getting insurance to OK it. Thank you Mary Prevost

     
  12. Lorraine

    October 14, 2009 at 3:39 am

    Can you clean the feeding bags without using the pump? I’m looking for a pump that uses bags that can be cleaned by gravity – finding that using the pump really slows things down.

    Thanks.

     
  13. psychmamma

    October 14, 2009 at 10:27 pm

    Lorraine –

    You CAN clean the bags without the pump, but it is a little more tedious. There’s a point to squeeze on the clamp that goes into the pump that opens the valve so that water can go through. You have to hold & squeeze the valve in one hand and hold and squeeze the bag in the other to force the water through. A little more complicated, but all the other advantages far outweigh this one small inconvenience, in my opinion. =)

     
  14. Amber

    March 4, 2010 at 10:38 pm

    I know this post is rather old, but I found your review while looking into the backpack accessory for this particular pump. My son recently had a G tube placed due to having lost his suck reflex after a status seizure damage to his brain and they sent us home from the hospital with this exact pump. I LOVE this pump but it hasn’t been exactly portable for us. Our insurance won’t cover the backpack for us and we don’t have the money to cover it out of pocket right now as it it costs in the area of $100. However, I am a seamstress by trade and I have modified all of my son’s clothing to accommodate his G tube by adding button holes in the side for access and I am curious if the backpack accessory is merely a toddler backpack with a similar setup for the tubing to come through to connect? I can’t find many pictures of it or even reviews of the backpack itself and the only review I did find just said that it was poorly made. If I have to pay out of pocket with money that I don’t really have I really need to make sure that it is going to be something that is going to be able to hold up and something that I can’t really fashion myself out of what I can’t find in the store already. I’m sorry if this comes off rude, I’m really just hoping that you can help me out with any information you can share.

     
  15. psychmamma

    March 6, 2010 at 6:15 pm

    Amber –

    Oy. The joys of insurance. Basically, it’s a small, lightweight toddler backpack. It does have a reinforced hole (on each side) for the tubing to come out, and it has Velcro straps to wrap around the neck of the bag (to hold it in hanging position), and Velcro straps that wrap around the pump. It has a mesh pocket that you can tuck the bag into for stability, but we never used it.

    I haven’t read the poor reviews you reference, but we were nothing but happy with ours. I felt like it was well made, durable & easy to clean. I would send you ours, but I already sent it to someone else in a similar insurance position.

    Hope that you can engineer something similar! I have zero sewing skills, but think it would be easy for anyone who does. :)

     
  16. Sandra

    September 14, 2010 at 5:22 am

    In response to Amber, if you want pictures, check out Zevex’s online product manual…pg 33 has diagrams of the backpacks
    ( http://www.moog.com/literature/Medical/Enteral/User_Manuals/Infinity_English_Operators_Manual.pdf ).
    My son, now 13, got his first pump when he was 6 months old…a Kangaroo 224, which although it had a battery, wasn’t considered “portable”. I made a bag (similar to a purse) to hang on the back of his wheelchair, and we used a twist-tie to attach the tubing to the chair handle so it could hang above the bag….where there’s a will there’s a way!

     
  17. Jeri

    October 1, 2010 at 8:42 pm

    My grandson has had this pump since the age of 4 weeks. We started out with an NG tube and now have a G tube. The portability has been a problem until I saw the backpack on the site. I also saw the cost :-). While I believe the cost would most definitely be worth it I did find a small backpack at Women’s Footlocker no less for $10. I had my mom (I can’t sew to save my life) put a buttonhole in it so we can run the tubing through and we sewed a velcro strap to hold the bag. This makes it so much easier. Right now we wear the backpack slung over one shoulder if carrying him (4 1/2 months old) or we hang in on the stroller or carseat with a hook. It works great. A real lifesave as we are on the go a lot and love to take our grandson with us. Our issue right now is the pulling on the tubing that scares us with the G tube. Does anyone have issues with this. I am so scared everytime I move him that I am going to pull that thing out of his tiny belly and it still hurts him to have it tugged. Any suggestions? Thanks so much for this site.

     
  18. psychmamma

    October 5, 2010 at 7:48 pm

    Jeri –

    So glad that you found a backpack and were able to modify it for such a reasonable rate!! That’s awesome.

    We used to worry incessantly about pulling on the g-tube, too. I think that because they’re sensitive to that feeling of it being pulled/tugged, they pretty quickly learn how to avoid it happening. They also are quick to wimper, squawk, cry or scream if it gets stuck or pulled, which is a great alarm system! I know some kids actually pull their own button out, but we never had that problem with Jenna. I think that exactly BECAUSE it was/is sensitive to tugging, she has some healthy fear that it will hurt if she pulls on it, so she never does. Of course, also from day 1, we’ve instructed her to be careful of the tube, so it’s pretty much ingrained. In 4 years, I think Jenna’s button has pulled out 4 or 5 times. Each time, it was our own fault. We got it caught between us and the crib, in the stroller, etc. Replacing the button is super-easy, and the calmer you stay, the calmer THEY will stay. It’s more scary than anything else. I think Jenna had a little soreness at the site for a few days each time, but no major problems. Instead of worrying, it’s probably better to accept that it WILL happen at some point and calmly prepare yourselves for how to put it back in. It’s also good to always make sure you have a “spare” button on hand for in case the one he has is damaged, lost or starts leaking.

    Wishing you all the best!

     
  19. zmama

    October 11, 2010 at 7:01 am

    Hi

    New here. We need help with our infinity pump We have recently got the Infinity pump for my daughter with CP, microcephaly, etc. Problem is we always get the No food alarm even when there is food. I’v done the troubleshooting…I’ve primed it and have made sure there is no air in the line. I’ve also changed the bag a few times but it is still saying no food when there is food. What is wrong?

    Also is there a way to silence get rid of all the loud “beeps” whenever you press a button? If you pause the pump it beeps, if you press run it beeps. It beeps at everything. My daughter has seizures if she is woken up and this pump is constantly alarming and if we pause it to give meds at night she wakes b/c it beeps when you press pause and then again when you press run. HELP!!

     
  20. psychmamma

    October 12, 2010 at 8:27 pm

    zmama –

    So sorry you’re having all these problems!! I have no idea what might be going on. I DO know that, where you clip the bag in and shut the hinged door has sensors that read whether there is formula passing through the tube. There’s a sensor for the food going in and one for the food going out. We have had false alarms that cleared up when I cleaned off the clear plastic over these sensors.

    The bottom line is that I would call your DME supplier and/or the Zevex rep. They can and should immediately help you problem solve and replace the pump if necessary.

    As far as the beeps, I don’t know of any way to silence them, except for the setting that allows you to turn off the alarm when the full dose is done. We silenced that, and now it simply flashes “dose done” on the screen without beeping. You NEED it to beep when there’s a problem so that you know. I personally like that it beeps when I turn it off and on and pause or start it, because I’m frequently doing it in the semi-darkness of Jenna’s room and the beeps are an audible prompt and reassurance that I pushed the right thing. It DOES seem like the beeps could be a little quieter though (Zevex – are you reading this?)! If it’s any consolation, Jenna quickly adapted to the sound of the beeps and now sleeps through pretty much everything (even when it alarms for a problem!). That doesn’t solve your immediate problem with waking and seizures, and that has to be frustrating. We absolutely love our Zevex pump, but it might not be the right “fit” for you. Your DME company should be able to help you out with finding what will be the best match for you.

    Wishing you all the best!

     
  21. Elizabeth's Daddy

    December 1, 2010 at 1:27 am

    I know I’m reading this a bit later, I hope you’ve resolved your issues with the “no food” alarm. My daughter has had the zevex infinity pump for about a year and a half. A few times we’ve had that problem, and although you wouldn’t think it, the little green rubber from the bags wears onto the black part of the pump that rotates. this causes the pump to not be able to push the formula through, and it thinks there is no food in the bag. Just clean/scrape off the green rubber stuff when it builds up on the black turney thing (don’t know what it’s called).

    Is anyone else outraged at the costs for renting this pump??? The first company we dealt with was a scam, and have been charging my insurance $600 per month just to rent the pump and get the bags. But several other companies, and the one we currently deal with, charge $115 dollars a month for this thing! It’s a great pump, don’t get me wrong, but wow, that is robbery if you ask me. I have quotes for several companies for to purchase a new pump, all around $1000. Seems really high to rent it for over $100 per month. Also, the cost of the bags is outrageous! They charge my insurance over $300 per month for the bags and tubes. I have to pay $100 of that. What a rip off for simple equipment.

     
  22. psychmamma

    December 2, 2010 at 2:12 am

    Elizabeth’s Daddy –

    Thanks for your helpful tip!! We have had the same experience with outrageous costs through medical supply companies. We found Zevex pumps to buy for $1000 AFTER our insurance (and us) had already paid out more than that in rental fees. We were still renting, so I called insurance with this information, but they said they would not cover it if we bought it, but WOULD cover it with a monthly rental fee through a medical supply company. Even though they would end up paying almost 5 times as much. No wonder our insurance situation is a mess in the U.S. Ugh.

     
  23. fnmc

    December 18, 2010 at 5:45 pm

    psychmamma,

    I am not a child…I am 31 and I have had a j-tube placed last month. Currently I have a kangaroo joey pump and backpack. While it seems portable, and is…it is heavy even for me. I am currently learning to walk again and I thought it was just me that thought it was heavy…every physical therapist that has had to carry it complains. Each doctor I see comments on its weight. But I was told that it’s the only one that does the water flushes. Am I reading your post right that the pump you use does the water flushes? If so…why am I stuck with this huge thing? I might be adult size but it is heavy and I do go through more food plus I am on continuous feed…maybe this is what they are taking into consideration. But don’t get me wrong my feeding supply company is extremely nice and take very good care of me. And speaking of insurance…I don’t even know if I am renting or buying. How does one know? Any insurance company that sends home someone, anyone, on a feeding tube must have a backpack. That is absolutely sinful. Thanks for your help in advance.

     
  24. psychmamma

    December 19, 2010 at 3:07 am

    fnmc –

    Thanks for your comment. Jenna was on continuous feeds when we started her on the Enteralite Infinity, for what it’s worth. However, I think I need to clarify the “flushing” issue. Jenna has a g-tube. We connect an extension (feeding) tube to her button that then connects with the tubing of the feeding bag. We flush the extension/feeding tube with a syringe that attaches to a med port on this tube. We CAN (and have) flushed the entire tubing of the feeding bag by filling the feeding bag with water and simply running it through the pump the same way we do her formula. There are feeding bags that come in a set with a “flush bag,” and the Infinity pump wouldn’t be set up to handle these. Since we’ve never used this sort of set, I don’t know enough to even know why you would need it, or if you could do without it. It may very well be that the Kangaroo pump is the only one set up to deal with these bag sets.

    I would suggest asking your doctor more questions about whether it would be possible for you to make a switch to the incredibly light and portable Infinity.

    If you received the pump through a medical supply company, odds are that you’re renting it. You can ask the medical supply company to be sure. Most companies charge a monthly rental fee, and then you own the pump after you reach a certain amount (which is usually FAR greater than if you would have purchased the pump outright). Unfortunately (and bizarrely), most insurance companies seem to prefer this setup, and balk at the prospect of the insured purchasing a pump outright, even though it would save the insurance company money in the long run. We pursued purchasing only briefly. The red tape and hoops they required us to jump through for approval were insane. We rented a pump for almost 3 years until it finally transferred to our “ownership.”

    Please feel free to contact me if you have any other questions that I can help with!

    Wishing you the best of luck and good health.

     
  25. Maria

    December 28, 2010 at 1:47 am

    Hello,

    Everyone my son is three years old and he has had the pump for about three years now and it works great the only problem is it really needs a child proof cover mine knows how to turn it off.,,,,

    Maria

     
  26. psychmamma

    December 28, 2010 at 8:44 am

    Maria –

    Oh boy. That’s no good. Ours alarms with a loud beep if turned off, and I *think* you can lock it so it can’t be turned off so easily, but I’m not sure how. I’ll check my manual and email you. Do you have the Zevex Enteralite Infinity?

    Even if it alarms, it doesn’t help you much if he just keeps turning it off. Hopefully, there’s a way to program/lock it.

     
  27. Little Ladybug Hugs

    February 8, 2011 at 12:10 am

    Hi,
    I came across your post while searching for reviews on the Joey. My daugther is now 14 months and we’ve been using the Joey pump for 11 of those months. AND HATE IT! It is over feeding her by 10-20 mls per feed and if we put a smaller amount in the bag it has been known to continue and pump air into her tiny tummy. Not to mention how bulky it is and heavy it is.

    We’re in the midst of fighting to have the Infinity covered by a government program & Insurance here in Ontario. It’s going to be a long battle but I’m determined to win!
    Melissa

     
  28. PsychMamma

    February 8, 2011 at 1:40 am

    Little Ladybug –

    So glad to (virtually) meet you! I’m crossing my fingers that you can get set up with an Infinity. I have no doubt that you’ll be thrilled. If there’s anything I can do to help you out, please let me know!! Heading over to check out your blog….

     
  29. TAmmi

    March 5, 2011 at 12:32 am

    My 8yr old has a G/J tube.We came home ith the knagaroo which I hated it was huge in the backpack and heavy with 1200ml of feeding.The backpack hung to her knees.We fianlly got a chamge in pumps to the Enteralite Infinity,she was sent the adult backpack which hangs to her knees,lol.Hopefully the company will return my calls for the smaller mini backpack.

     
  30. PsychMamma

    March 6, 2011 at 6:34 pm

    Tammi –

    Ha! Funny, but frustrating. Here’s hoping you get the smaller, mini backpack soon! You will love it.

     
  31. Laura

    June 21, 2011 at 9:38 am

    I’m so happy to have found this site. My husband had cancer and has had a feeding tube for about 10 years. He added continuous feedings via pump a few years ago in hopes to get and keep his weight up. The slow feed is also gentler on his stomach than bolus feeds. He has a kangaroo pump now. He is active and on the go (and burning up calories) on good days. The kangaroo pump is difficult to carry, heavy, and alarms all the time unless it’s sitting perfectly flat. It works fine on a tabletop or on the IV pole, but not when it leans in the car as we go around a corner or tilts on a rolling cart or in a carrying bag. We planned to talk to dr/dietician to try and get a different pump but didn’t know what kind to request that might really work. All of the comments have been so helpful! Thank you.

     
  32. PsychMamma

    June 21, 2011 at 1:59 pm

    Laura –

    Glad that you found my site and glad that you found some helpful information!

     
  33. harley

    July 10, 2011 at 11:12 am

    http://www.mountainwarehouse.com/travel/backpacks/mini-5l-10l/electric-small-rucksack-p2121.aspx we have this in blue for finn we rig it up inside for bottles, however we need to adapt it now weve just been moved onto 500ml pouches its not working so well it would if it was being worn, but ours needs to sit upright on the floor. it was perfect for the 130ml bottles even with the universal nutricia giving sets but now we have mobile for the new pouches xx

     
  34. BBKZ Mom

    August 7, 2011 at 5:25 am

    We have been up several times each of the past two nights with the “no food” alarm on the Zevex Infinity. For some reason, it seems to work better during the day — maybe because the feedings are shorter. After scouring the blogs from 4-5 a.m, this is what I’ve found:
    1) Lots of people had problems with a previous bag design, but ours is the new design that came out about a year ago.
    2) Back-pressure coming from a full tummy can cause a no food alarm, so you should try venting the child. We just did this, and he did give off a fairly significant “belly belch.” Now it seems to be working.
    3) Another person suggested putting a rubber band or bungie around the pump b/c the door loosens over time and doesn’t press down hard enough for full contact between the sensor and the tubing. So we are trying this too.
    Problem is, we did both at the same time, and now we don’t know which was the one that worked. I’m also going to clean the wheel as suggested above, but not until after the feeding ends b/c it’s working right now and I don’t want to risk messing things up.

     
  35. Karen Sears

    September 12, 2011 at 8:32 pm

    I came across this while looking for a comparison on the Kangaroo Joey and the pump my daugther has been using, the good ole InfinityLite. We started with the larger one but our GI told us about the smaller one during a post op consult AND arranged for the delivery of the smaller one before the day was out. We started supplementing her nutrition because of swallowing weakness due to myasthenia, but we weren’t aware at that point that a spinal AVM had damaged the nerves to her intestines and slowed her motility to a crawl. By the time she was correctly diagnosed, we had to take her off enteral feeds and she went on TPN. Now that was a big backpack. It took 4 years but we slowly got her off the IV nutrition and she is fed through a Jtube.
    One of our problems with tube feeding was Rodica is mobile but her preferred place is the floor. She sits, lays on her side, back, wiggles from one to the other and she was always popping the cover off the med port. She also has developmental delays and though she can untangle herself she doesn’t watch the tubing. I spent more time cleaning formula off the floor that should have been in her belly. While on TPN and enteral together we used the 24″ to better match the length of the IV tubing so I could nest the backpacks. We then tried the 12″ but it would still get under her. I finally email Kimberly Clark and they told me they have a 2” medication administration extension that is only 2″ long. What a find. No more floor puddles. My preferred is the Applied Medical version – it is made of a material that stays more secure on the end of the bag tubing
    and it has a clamp which the KC one does not. The length of the tubing from the pump is more than adequate with the 2″ extender.
    I still have not figured out how to fill and prime so that if the backpack tips over and the bag is lying on its side, the tubing will stay full. My solution, which works to a point is I made a bag that allows the pump to lie flat and the bag hangs above. For the most part it stands upright.
    I too am outraged and frustrated by the costs and the insurance companies games. Rodica is about to turn 21 and we had to switch to medicare. The new competitive bid program meant we could no longer use the local home health company that specialized in pediatric home care, but would have continued to be a provider except they were outbid by the big corporations who are all talk about customer service but my experience so far has been a disaster. It’s hard to find the actual product info for the various companies, but Apria listed the Zevex so I went with them They keep trying to push the Joey on us and don’t keep zevex pumps handy if you need a replacement because they are not patient first unless you push, fight and push some more to break free from the corporate marriages between companies. (I had to have the first one exchanged because something funky was happening to the buttons, they came with a new one and to take the old, but the new one was not charged, and since my daughter is on continuous feeds and we were heading to a pt appointment I had to get them to leave the old pump. I had reminded the office it needed to be charged and was assured pumps were always delivered fully charged. Anyway there is a sensor malfunction in the new one, and I was told I have to wait a week until they can get another pump in stock. The local company would have had a new one out that afternoon.) I’m glad I found the info on your site about the weight difference because that would be an issue for Rodica.
    Thank you for your website. I wish I had found it sooner. I’m not yet on the social media bandwagon although I do use my computer. I also just found the Oley Foundation website about home parenteral and enteral feeding which again I wish I had found sooner.
    Sorry I rambled on, but I am frustrated being pushed around by these large corporate providers and insurance companies and wish I knew how to organize parent like us to stop the nonsense. Best wishes for you and your daughter.

    I wi

     
  36. PsychMamma

    December 28, 2011 at 10:53 pm

    Karen –

    Thanks for your comment! I’m glad you found my site, too! Sorry I’m so sporadic with posting lately. I hope to get back in the swing of things with the new year. {fingers crossed} If you have more questions or just want to connect, feel free to email me at psychmamma1 {at} gmail.com

     
  37. Sarah Baker

    January 17, 2012 at 2:59 pm

    My husband and I have a 3month old little boy that is on a feeding pump for an unknown amount of time. He currently has the Joey pump that you are right is big and bulky and makes going anywhere difficult. I wish we could have pushed for a pump like this, but we were told that when he gets older we will be switching to a different pump that he can be more mobile with. I can’t do much longer or chasing a 2year old and carrying a 3month old and an IV pole around my house… Houses are not made to be rolling an IV pole around and carpet is horrible to try and wheel that thing everywhere.
    Looking forward to the smaller pump…

     
  38. Jean Henry

    February 20, 2012 at 12:15 am

    Did you find someone for the Super Mini Backpack? I have some kind of “knock-off” Cincinnati Children’s gave us over a year ago but whenever the bag gets wet we’re tethered to the pole until I get it wshed & dried. I’s sure be interested in it if you’re still willing to part with it. Jean Henry for Judah-Michael Henry, Dayton, Ohio

     
  39. mavis

    March 20, 2012 at 8:31 pm

    where do you gt one of these little back packs ??

     
  40. Colleen Hiebert

    June 5, 2012 at 12:35 pm

    Just found your site as I have been goggling issues with this pump – we have so much trouble with the “no food” alarm going – sometimes every five minutes and can’t seem to trace why this is happening. We work out the air ect. but it is exhausting! Our 15 year old daughter is only on the continuous at night so I would be happy to have a Kangaroo pump again right about now as portability isn’t the issue. Any advice?

     
  41. Ana

    July 23, 2012 at 5:40 pm

    We have the same pump – question, have you used it abroad? Is there anything we need to know about recharging it in other countries? Thanks.

     
  42. PsychMamma

    July 26, 2012 at 3:04 pm

    mavis –

    You can now find them at Amazon online, or directly through the Zevex Enteralite site. Make sure you’re searching for a backpack for a Zevex Enteralite Infinity pump. There are two sizes – the smaller one is best for very small children, but only holds a 500mL bag. There are Etsy shops that sell backpacks or bags that will customize them to fit your pump, but they are usually more expensive (although more “fashionable”)

    I hope this helps!

     
  43. PsychMamma

    July 26, 2012 at 3:14 pm

    Colleen –

    Our main problems come at night when our daughter rolls over onto the tubing and pinches it. Even if she’s rolled off by the time we get there, the pump keeps alarming until it is reset. Beyond that, we have had occasional issues with bent tubing from packaging with the Zevex bags. Again, if the tube is bent to the point of pinching off flow, you’ll have an alarm. We correct this situation with a bit of tape around the bent part of tubing to form a “splint” of sorts.

    We did have one pump that went bad and was no longer reading the sensor flow correctly. We contacted the Zevex customer service line, and they were wonderfully helpful and replaced the pump at no charge.

    Another commenter notes a few other issues that we have occasionally encountered, and I’ll just copy & paste those words:

    1) Lots of people had problems with a previous bag design, but ours is the new design that came out about a year ago. The new bag design seems to be MUCH better
    2) Back-pressure coming from a full tummy can cause a no food alarm, so you should try venting the child. We just did this, and he did give off a fairly significant “belly belch.” Now it seems to be working.
    3) Another person suggested putting a rubber band or bungie around the pump b/c the door loosens over time and doesn’t press down hard enough for full contact between the sensor and the tubing. (this did seem to help us for a while with the “bad” pump that Zevex replaced)

    Overall, we have had so very few issues with the pump, that the convenience of size and weight far outweighs any minor glitches. Routinely losing sleep is a little more than minor, however. I hope you solve your issue soon! Best of luck!!

     
  44. PsychMamma

    July 26, 2012 at 3:15 pm

    Ana –

    We have not used the pump abroad and I’m sorry that I can’t help you with recharging issues. I would contact the company directly, but I would *guess* that you simply need to make sure you have an appropriate converter to plug into the outlet that would then allow you to plug in the pump without problem.

    Good luck & happy travels!

     
  45. CCSM

    August 15, 2012 at 11:28 pm

    While i don’t use this brand of pump, i do us the exact look a like infinity pump from nutricia (im in AUST) for our 6mth old son, i immediately needed it to be portable – we live in the middle of nowhere and to see drs and specialists its a 3 to 15hr drive so kinda need to have it portable, so the day after we got home i went shopping for a suitable back pack – i found a little pull along back pack (has a handle that extends thats great for my 3 yr old to wheel around… not so much us! lol – BUT it holds its shape and when sitting on the floor or table the bottle of milk stay upside down in the correct position (think baby bottle of milk).

    anyway – i have 4 other young children who run around the house and have habits of knocking the bag over and forgetting to pick it back up and of course im forever dealing with the air in line crap cause the bottle has been knocked over and is not upside down draining any more – so this is why im here – what do you use that enables your daughter to run around – upside down – right way up – ect… and not have the issue of air getting into the line???? (if you could link me to pages with pictures that would be handy in me trying to work out what i can get over here that is similar!)

    thanks heaps

     
  46. PsychMamma

    August 26, 2012 at 2:50 pm

    CCSM –

    I’m not sure I’m going to be a lot of help here. Jenna has never been on continuous feeds (except for during her hospital NICU stay). This means that we don’t have the issue you’re describing. She has 3 bolus feeds throughout the day – one in the morning, where we keep her sitting quietly with activities, books or movies, and the other two are while she sleeps (afternoon nap and overnight).

    Maybe other parents reading will have some advice for you! Sorry I’m not a better help on this issue!

    Good luck!

     
  47. Xime

    October 2, 2012 at 2:17 am

    Hi, i know this is way late but hopefully you are still reading the comments :)

    English is not my first language so apologies in advance for my horrible grammar.

    My son Rafael is 18 month old and has ESRD. He had a G tube placed in march and we started using a pump about a month ago. The hospital gave us a prehistoric kangaroo 224, which we recently changed to the Fresenius Applix Smart that has been impossible to use due to not recognizing the feeding set. I would love to get the Enteralite Infinity but we live in Chile :(

    Perhaps someone here can help me with some info on how to contact zevex? Do they have an international site?

    Thanks, and congratulations on your site!

    Ximena

     
  48. PsychMamma

    October 2, 2012 at 2:07 pm

    Ximena –

    I have two links for you. The company that makes the Zevex Enteralite Infinity is Moog. It looks like the closest branch for you is in Brazil:

    http://www.moog.com.br/

    Here is the main, U.S. site link, in case you want to check that. I would think that they could easily ship internationally. Your only “issue” would be repairs or help with any problems, but we haven’t had any for 6 years, and most things can be managed online, now.

    http://www.moog.com/products/medical-pump-systems/enteral-feeding-pumps/enteralite-infinity/

    Also: your English was excellent!!

    Best of luck to you and your son!

     
  49. Mary Primmer

    November 15, 2012 at 9:28 am

    Hi,
    I haven’t read all the posts but am excited about this infinity pump. We are looking for a new pump for our 20 year old son who is fed via g-tube three times a day. We had a compact flo but they discontinued the bags so we were gi
    ven a kangaroo joey. It is heavy but my biggest complaint is the noise. It is so loud (we try to stuff it into a drawer at home), we are disturbing everyone around us in public, especially in a movie.
    Can you hear the infinity pump when it is hooked up?
    Mary

     
  50. PsychMamma

    November 15, 2012 at 3:54 pm

    Mary –

    The Infinity is incredibly quiet. When everything else is absolutely silent, you *might* be able to hear the motor hum a bit, but we never notice it. We’re going on 6 years with an infinity pump and couldn’t be happier. We did have one pump that started making clicking noises as it pumped (which was annoying), but we found out it was going bad, and the company (Zevex) replaced the pump at no charge for us. I think you’re going to love it!

    Best of luck!

     
  51. Sabrina

    May 13, 2013 at 4:56 am

    Right away I am ready to do my breakfast, after having my breakfast coming over again to read additional news.

     
  52. Elizabeth Gutierrez

    October 29, 2013 at 6:00 pm

    My son has had the kangaroo Joey for 3 months now and insurance still isn’t paying for it. We are being billed for the past 3mo.i would love to switch to the zevex being that it is so small and light weight, it would be great. My son is 16 months and can’t carry this pump on his own. Do you know of any places that can help? We no longer have insurance. My husband was laid off. I am wondering if someone will help with costs?

     
  53. PsychMamma

    October 29, 2013 at 6:07 pm

    Elizabeth –

    I’m so sorry to hear this. You have enough to worry about with your son’s health – you don’t need to have financial worries on top. Ugh. Our healthcare system is so frustrating to me. The best advice I can offer right now is to check with the Oley Foundation. If don’t know if they have programs in place that offer financial support, but I know that they will be able to at least steer you in the right direction. Their website is http://www.oley.org. I would look for contact info there and email and/or phone them. They are great people and we’ve worked with them in the past.

     

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