Living Life to the Fullest with a Tube!

As famous author Dr. Seuss once wrote, “Sometimes the questions are complicated and the answers are simple”, and in the case of enteral nutrition he’s exactly right! To those new to the world of feeding tubes words like G-tube, J-tube, blenderized tube feeding, “tubies”, stoma, etc. can be overwhelming. But, have no fear, I have done my research and have provided you and your family with some of the best tips and tricks of the trade so that any complication that you come across seem like a piece of cake!

To make it easy to navigate, I have divided all of the complications up, so you don’t have to keep scrolling, trying to find the issue that pertains to you most (which is one of my pet peeves). To ensure that the information is accurate and the best possible help to you and your families, I have gotten insight from several families in the Clemson, Seneca, and Anderson areas that have told me their feeding tube stories.

Family Meals and Feeding

One of the top issues, especially in families that have a child who is on tube feeding, is the fact that they often feel excluded because they aren’t eating the same things as their siblings. Although it sometimes might be difficult to avoid, especially if they have certain needs or dietary requirements, this can be tackled by trying to include them at the dinner table by feeding them the same foods, just varied by ingredients.

Some of the main ingredients to make family meals blender-friendly are ones that will thin the family meal enough that the blend will go smoothly through the feeding tube. This could be a juice, chicken broth, or an oil, such as sunflower, safflower, or sesame oils. Another ingredient that many individuals use to make the blenderized feedings smooth is to add milk (cow, soy, almond, etc.) or kefir to prevent the mix from getting foamy. Another trick that I have found that thins meals is to add canned fruit that has no added sugar or syrup. This adds fiber and more produce to their blend.

Also, keep in mind that eating the meal is only one of many interaction that we have with food. Children that are on blenderized feeds can stay involved by helping shop at the grocery store (example: picking out their veggies) and may be able to help with some of the meals prep, as appropriate.

Traveling with Tubies

We all love to take our kids and families out on the road, and see the sights, but sometimes it’s hard to travel and pack all of the necessities. The trouble is always not packing enough or packing too much, or just leaving something behind in the chaos.

Use the time before you leave for a trip to your advantage. Make a detailed list of what supplies need to be packed and list which bags they will be packed in. Plan for the worst, like misses flight or a traffic jam, and prepare yourself by having extra supplies and keeping them close by.

When flying, it is important to check TSA’s policies on medical supplies and items that are allowed. It is crucial to print out any labels for items/supplies that you have packed that could be potential issues with TSA’s policies, as well as print labels for the medical supplies bag because it would be a carry on. Your doctor can also provide a letter of necessity as well that can help with security.

Below is a packed carry on bag that a friend of mine provided me that she uses for her child who uses formula still.

Here’s What She Included:

• Feeding Pump and Backpack
• TSA/airline policies (printed)
• Pump Charger
• Full pump set (750 ml in a 500 ml bag)
• Blue Puke Bags (you can never be too prepared!)
• 4 extra cans of formula (just in case a bag gets lost)
• 1 60mL bottle of sterile water
• Med Syringes (5ml & 10mL)
• 35 mL syringe
• Extension Tubes
• 2×2 Gauze
• 60 mL cath Tip syringe
• Emergency G tube Replacement Kit

As I was reviewing her bag, I also thought that Clorox wipes, hand sanitize, baby wipes, diapers, and plastic grocery bags might be helpful. Bring a document that summarized your tubies medical history, meds, emergence contacts, etc. can also be helpful. If for some reason you needed to go to the hospital all of the information you will need to know will be in one place.

I found that The Oley Foundation and the Feeding Tube Awareness Foundation were also great websites that gave me lots of information about policies, and the supplies/items that any family would need to bring when on-the-go!!

School

Kids probably hate going to school for one reason, while their parents probably don’t like it for other reason. Either way, these are some tips to ensure the school day goes swimmingly!

Before enrolling your child into school, ensure that they have the proper handling procedures for your child, confirming that they understand how to use the equipment and have the training. This may including:

• Clean hands before venting a child or attaching an extension set
• Wear gloves when appropriate
• Make sure that tubing is out of the way during toileting/diaper changes
• Ensure that tube sites are not touched by students

The school should have written instructions for your child’s feeding schedule including formula type, volumes, periods of time, water flushes, etc. Make sure all the supplies are clean as well, and if they need to be stored in a cool temperature, provide a backpack or insulated ice pack. Talk to your child’s teachers as well, ensuring that they understand any allergies as well!

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I hope you and your family members can use these tips to reduce any unwanted stress or worry about any of the issues that you are facing. It is important to know that you are not going through this alone and that there are others dealing with the same things you are, and probably have the same questions you have, so feel free to comment any questions or concerns you have!