The Tube Feeding Emergency Kit

Imagine having fifteen minutes to evacuate before a natural disaster strikes. Or imagine rushing your bleeding child to the Emergency Department of a local community hospital completely unfamiliar with tube-feeding. Having an emergency kit full of tube-feeding supplies can make these situations much easier and less stressful for you and your child. 

We actually have two emergency kits. One is the day-to-day kit that we take along with us wherever we go. It simply contains a 60 mL Monoject™ syringe (that fits into a MicKey button), an extension set, and a roll of tape. You can handle most basic emergencies with this kit. 

The larger emergency kit sits atop a cabinet right next to the front door. It is packed and ready to go whenever we need it. We bring it on long trips and hospital visits. Fortunately, we have never had to evacuate!

The contents of the kit include:

  • 1 extension set

  • 1 extra G button (a used one is fine as long as the balloon is intact)

  • Stoma care supplies: gauze, Q-tips®, tape, and some triamcinolone cream

  • An NG tube or foley catheter to hold the stoma open if the button falls out

  • A day’s worth of medications…the ones in pill form, at least

  • 1 60 mL Monoject syringe for feeding or venting

  • 2 smaller Monoject syringes that fit into the button for button problems or medications

  • 1 pump feeding bag

  • 2 cans of formula

  • 1 bottle with cap for mixing and storing extra formula

  • 2 single-serving packages of baby cereal for on-the-go feeding

  • 1 washcloth

  • 1 change of clothing

  • 4 diapers

  • A package of travel wipes

  • Personal care supplies like a toothbrush, hairbrush, ponytail holder, etc.

  • Basic care instructions, including a list of medications, feeding schedule, phone numbers for doctors and other medical professionals, emergency medical forms, and any other pertinent information

  • A list of items to grab that cannot be kept in the bag…ours includes refrigerated and liquid medications, the feeding pump, and a favorite stuffed animal

All of these items fit in a small diaper bag that can be thrown over the shoulder as you are running out the door. Your items may be different, of course, but this list should get you started on creating your own kit. Give yourself peace of mind by packing yours today!

—Susan Agrawal

Reprinted with permission from Complex Child E-Magazine (www.complexchild.org)

 

Editor’s note: Those who know Susan may realize Susan’s daughters’ health needs have changed since this article was written. When I requested permission to use the article, Susan replied, “Of course!...Though our Go Bag has just about quadrupled in size, because now we have enteral, infusion, urological, and respiratory stuff in there.” Susan’s experience is a reminder to update your emergency kit periodically, or as needed. To help you in this effort you might try Oley’s Travel and Hospitalization Packet.

LifelineLetter, Nov/Dec 2010


Custom Enteral Backpack

Portable enteral and infusion pumps are a blessing for home parenteral and enteral nutrition (HPEN) patients. They allow us to participate in normal activities while infusing. But as an active twenty-three year old on continuous J-tube feedings, I was frustrated with the lack of options and high cost of backpacks from the pump manufacturers. I wanted to find something more fashionable for daily use.

I went on the popular Web site www.etsy.com and contacted the seller “Retrofied,” who makes cloth bags. Though she was previously unaware of portable pumps and tube feedings, she and I worked together to design a small backpack that is both stylish and functional.

There is a hook sewn in the top of the backpack to hang the bag of formula and loop of excess tubing, the pump rests on the bottom of the bag, and there are two additional pockets sewn inside that I use for other supplies, as well as personal items like my wallet, keys, etc. A small opening was also sewn into the lower side of the bag for the tubing to exit. I can then connect it discreetly under my shirt to my J-tube.

I ultimately purchased two bags in different fabrics of my choice. I receive complements on them daily from people unaware they are bags used for tube feeding.

—Emily Convery
emmers42@gmail.com

LifelineLetter, Nov/Dec 2010