The EnFit connector subject (aka controversy)

The Joint Commission, the nation’s foremost accreditation organization for health care programs, recently   reiterated  that it does not mandate the use of any technology, nor does it endorse specific manufacturers, products, or devices.  The clarification reinforces hospitals and clinicians’ ability to determine which products are best for their patients.

The FDA (the United States Food and Drug Administration) also does not mandate the use of a particular device connector.

This past November, Ron Coppinger, who is the founder and administrator of the Adult G-Tube Feeding Group on Facebook, contacted the FDA in reference to the ENFit connector devices.

Benjamin Fisher, Ph.D., the Director  of the Division of Reproductive, Gastro-Renal, and
Urological Devices,  Office of Device Evaluation Center for Devices and Radiological Health at the FDA, responded to Ron’s email with the following:  “The FDA does not mandate the use of a particular device connector. The Agency recognizes device connectors are important to the quality of life for patients who rely on enteral feeding. It is important to ensure device connectors are appropriately developed and manufactured considering their benefits and risks, particularly risks presented by misconnections. FDA continues working toward ensuring a wide variety of perspectives (including patients, manufacturers, and health care providers) are incorporated into voluntary consensus standards we recognize and our non-binding guidance documents.” 

Some of you may remember a short post I made last May.  I was part of a focus group hosted by the FDA at their headquarters near Washington DC.   Dr Fisher, who responded to Ron’s letter, was at that meeting.   The FDA wanted to learn more about  tube feeding in a home setting.  This “collaborative conversation” was sponsored by the  Oley, and the Feeding Tube Awareness Foundations.

The FDA wanted to know more  about what challenges we  face—what a day in the life is actually like, as it pertains to being tube fed.  One of the specific aspects they want to better understand, is how we accomplish using a blenderized diet instead of formula.

I asked if the FDA would like to see an actual demonstration of how a person blends a meal that will be used for tube feeding, and they very much were.

Before the meeting took place I made a short post about it here on TubeChic, but I never followed up with writing about it afterward.

When I spoke at  that meeting, I was surprised at the interest shown by those attending from the FDA.  I demonstrated blending a meal that included chicken parmesan, broccoli, and applesauce.  (They were provided with the recipe used for the chicken parm.)  I made sure to weigh everything beforehand, and was as precise as I could be, due to their interest in its nutritional value, rather than just tossing some in my Blendtec blender, like I would if I actually was at home.  And, I explained that to them, that how in our household, mealtime is mealtime.  It’s not an exact science, nor is it opening a can of formula.

I brought my meal to the meeting in a leakproof bento box like this one:

only mine is hot pink (of course)

I wanted them to see tube food as a meal, as food, not some ambiguous medical liquid. I think it was a revelation to them, when they saw how  easily, within less than 3 minutes, a meal that any of them would probably love to have for their own, was turned into a meal for me, and it gravity fed with ease while I continued to answer their questions.

I tell you, those questions after I blended (and while I sat there with my Fifo bottle, gravity in its holder, clamped onto a portable stand,  just didn’t stop!  My voice is weak, and even with a microphone, it was a challenge.  BUT, it was heartening for me to witness firsthand. their palatable interest.  And, if you think about it, it makes sense.  How many of you even considered tube feeding as a ‘thing you would do’ before the health issues arose that gave you cause to do so?  Most people never even think about the subject.

Another area of tube feeding discussed at length during this meeting last May was on the ENFit connectors.

As this was an information gathering session for the FDA, (they were there to “listen and learn”) there were no summations, or stated conclusions expressed by them, when the meeting wrapped up.

I wrote all of the above to say that there is no credible source that indicates our legacy connectors will be discontinued, or that we will be forced to switch over to the ENFit devices, unless we desire to do so.

If you want to continue to use, or switch to  using legacy connectors for your tube feeding, and your doctor or medical supply company is being unresponsive to your wishes, it is not because they are complying with an enacted law or mandate, and it is your right to choose to have legacy connectors.  Speak up for yourself, or the one you are caregiver to.  The manufacturers are still making, and will continue to make legacy connectors.

I have never used ENFit, I have seen some of the components, but I cannot personally speak to any of its shortcomings or  strengths.   I live in the US, and have original Medicare for my medical insurance.   Because I blend rather than using formula, Medicare does not cover any of my tube feeding supplies anyway, and I have a stockpile of legacy AMT Mini One feed set extensions,  courtesy of eBay, and I don’t see myself running out anytime soon.  If I do run low, you can count on me continuing to replenish my supply with the same type I’ve always used.

On the announcements page of Tubechic, I’d posted a link to Ron’s petition to keep legacy connectors as an option for tube feeders.The petition is now closed, and was an overwhelming success.  You can see the vote tally on the announcements page.

On the subject of ENFit safety, here is some reading material:

ENFitNelsonReportBacterialTesting

http://allianceforpatientaccess.org/a-victory-for-nicu-patient-safety/

And, below, see some of us happy to be able to use what we want for our tube meals 🙂

Bryan, the Traveling Tubie

Yours truly

Chris and Christina (one of the cutest couples on this planet! and almost certainly the cutest couple in Australia!)

In case you missed it when I posted it last spring, here’s my ‘almost famous’ chicken parm recipe:

Chicken Parmesan

Serves 8

One serving = approximately 257 calories 16 g fat (saturated fat 5 g, monounsaturated fat 3 g. polyunsaturated fat 1 g, trans fat 0) 22 g protein, total carb 5 g (dietary fiber 1 g, sugars 2 g)

INGREDIENTS:

1 Jar/20 fluid ounces IL Mulino brand marinara sauce

1 cup (30g), Shredded Mozzarella Cheese

12 Tablespoons grated Parmesan Cheese

16 0z raw chicken breasts trimmed and pounded to a 1/ 2-inch thickness

1/3 cup Almond Meal

Salt and pepper to taste

2 Tablespoons olive oil to saute chicken in.

DIRECTIONS Preheat oven to 350 °.

Season flattened chicken breasts with salt and pepper. In a shallow bowl, spread out almond meal mixed with 1/3 of parmesan cheese.. Dredge the chicken breasts in the almond meal mixture to coat.

Heat olive oil on medium high heat in a sauté pan until it shimmers from being very hot, but being careful not to let the oil start smoking. Cook the coated chicken breasts for 6– 7 minutes per side. Transfer chicken to a casserole pan.

Sprinkle half of the mozzarella on the chicken breasts. Pour sauce over the chicken/ mozzarella, covering it completely.

Sprinkle remaining parmesan cheese over the chicken and sauce, and then top with the rest of the mozzarella.

∼***∼

…And, just because…

The. Most. Awesome. Chocolate. Chip. Cookies. Ever.

 (((Ever!!!)))

 It works best to freeze beforehand, don’t thaw first, and place on cookie sheet that was pre-heated in the oven.

Ingredients

  • 1 cup butter, softened
  • 1 cup white sugar
  • 1 cup packed brown sugar
  • 2 eggs
  • 2 teaspoons vanilla extract
  • 2 1/2 cups all-purpose flour
  • 1/2 cup oat flour
  • 1 teaspoon baking soda
  • 2 teaspoons hot water
  • 1/2 teaspoon salt
  • 2 cups semisweet chocolate chips
  • 1 cup chopped walnuts
  • 1/2 tsp cream of tartar

Directions

  1. Preheat oven to 350 degrees F (175 degrees C).
  2. Cream together the butter, white sugar, and brown sugar until smooth. Beat in the eggs one at a time, then stir in the vanilla. Dissolve baking soda in hot water. Add to batter along with salt. Whisk the cream of tartar into the flour mixture. Next, stir in flour, chocolate chips, and nuts. Drop by large spoonfuls onto ungreased pans. (Or preferable freeze, or at least refrigerate for a couple of hours beforehand)
  3. Bake for about 10-15 minutes (depending on your oven and if the dough is frozen or cold) in the preheated oven, on pre-heated cookie sheet or until edges are nicely browned.

(using Blendtec wildside mini jar) give a whirl in blender until mostly crumbs

pour in some coffee and blend a bit more

add milk until you reach desired consistency

all ready to tube – yumzo!!!

 

One last thing.  I know I’ve been promising a review of Penny Werner’s new recipe book.  It’s coming soon.

I promise.

 

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