Saturday, January 4, 2014

Grrr....PEG not fitting enteral bag.

First, if you have a tubie, please chime in if you think you may have any ideas on this challenge!!

Since Garrett's g-tube surgery on December 20, we have had a Kangaroo Joey pump and enteral feeding bags that theoretically fit the tube he has until a button replaces it on the seventh of February. Gravity feeds have worked well...also called bolus feeds. We open a can of formula and attach a 60 mL syringe to his tube and pour the food right in. It is relatively fast, but he has to stand very still and be pretty quiet so it runs smoothly. This week, however, I saw the simplicity of the pump and the ability to feed him while he sleeps as beautiful things. He is up to four and a half cans of Pediasure Enteral formula with fiber. It truly is a challenge to get that into him by gravity/bolus feeds so far. He has to try to eat by mouth first, then after that, I will put formula into him. But we are having a problem. The fitting that should work smoothly between his tube and the feeding bag just doesn't hold...usually. It's plastic make piece into a silicone female piece, and 3/4 times the fittings just pop apart! I adjusted feed rate, cleaned fittings, and still no luck. I even took an empty enteral feeding bag and tried to fit it to his tube with the tube clamped off, so no pressure. Still, no deal. Tonight, I tried to put the feeding bag piece into a smaller silicone female port used for meds, and that worked, but the cap for the larger feeding port would pop open!! I taped it like crazy, and it worked, sort-of. Had a sticky, milky mess to clean when I disconnected it all!

I bought Garrett a really nice backpack for this pump purpose. It is a Gregory brand and is read, and it is perfect for him. It has a sternum strap and kidney strap so that he can be super-active while he is fed via pump. He loves to show people how he can "eat and play," and I find it simple and much less restrictive.....when it works!!

I spoke to our NORCO feeding rep, and he said the lady we need to chat with isn't on call this weekend. Bummer. However, Monday we will tackle this!! I am told things will be easier for connections when he has a button. I sure hope so!! But no matter, I am thankful that this tube is present and my boy is thriving.



  1. When my daughter had a peg we had the same problem, the adapter always came out of the port!! The solution us an AMT clamp

    They are awesome!!

    If you have to use the pump more during the day, the Infinity pump is smaller and easier for active kids. We had the joey for awhile but we like the infinity more

  2. Ech, so sorry to hear about the messes and all. I would second Melissa's recommendation of the AMT clamp. While we've never had to use them, I've heard rave reviews by lots and lots of other g-tube parents. Like Melissa, we use the Infinity pump and it is fabulous and far less fickle.

    I'm looking forward on your behalf to the switch over from the PEG to a button. Such freedom! Such cleanliness (no one warned us about the PEG gunk build-up...ew).

    But most of all, I'm thrilled for Garrett to be able to get enough nutrition. It makes such a difference in brain function (long story...sigh), overall health--you name it! Of course, I'm a big believer in homeblends and food-based nutrition, which we have found to make that much MORE difference in health, but that's just me.

    I'm so happy you are working with Dr. Saneto. We need to get in to see him soon (I know, I tell crazy jokes, right???).