9 minute read
Discharge Planning for Home Tube Feeding: What to know before you go
Written by Catherine Karlak, MS, RD, CD, CNSC and Samantha Honeywell, MS, RD, LDN, CNSC with the ASPEN Enteral Nutrition Education Subcommittee
INTRODUCTION
Going home from the hospital with tube feeds can feel overwhelming at times. We gathered advice from the healthcare professionals at the American Society of Parenteral and Enteral Nutrition (ASPEN) on how to help the process go more smoothly. Here’s what they wish their patients knew:
BEFORE YOU LEAVE THE HOSPITAL
This is the time to make sure you are familiar with your tube feeding prescription, and what home health company will be sending you supplies after you discharge from the hospital. Understanding what services and equipment your home infusion company will (and will not) provide can prevent unexpected surprises in the future. Don’t hesitate to reach out to the hospital staff to get answers to your questions. Before you leave the hospital, make sure you know the following:
• The name and contact information for your equipment supplier
• What medical professional should you contact if you have questions or concerns about your tube feeding prescription, and/or the feeding tube itself
• What supplies will be provided for use at home, and if they are different from what is used in the hospital
• When your first delivery of supplies will arrive, and if the hospital can provide any supplies to take home, in case of a delayed delivery
• What your insurance covers, and what will your costs be
• What kind of feeding tube you have
• Your tube feeding prescription, including the name of the formula, and the volume of formula you should receive each day and whether you will need to change formulas in the future
• How you will administer your formula by pump, bag or syringe, being sure to flush with water before and after all feedings and medications
• How much additional water you should receive daily and how often
ONCE YOU GET HOME
At home, with practice, you will start to feel more comfortable with administering your formula. To ensure you stay safe and to avoid interruptions to your feeds:
• Have a clean, organized space, free of trip hazards, for your tube feeding supplies
• Wash your hands prior to infusing feeds and manipulating your feeding tube
• Call your supplier to obtain refills of formula and supplies, typically when you have 5-7 days of formula and supplies remaining
• Unopened formula can be stored at room temperature. Open cartons should be covered and stored in the refrigerator for up to 24 hours. Formula can be removed from the refrigerator 30 minutes before using if cold formula causes discomfort, but it should not be warmed
• Formula can be in an open feeding bag for up to 12 hours before it needs to be discarded. Do not top off formula in a bag as this could lead to bacterial contamination
• There will be limits on the amount of supplies your supplier will provide. Ask how many times your equipment can be re-used before it needs to be replaced
• If being reused for more than 24 hours, pump and gravity bags should be rinsed out and stored in the refrigerator between uses. Wash other supplies with hot soapy water and let air dry before storing in a clean container
• In most cases, the timing of feeds can be adjusted to fit your schedule. Work with your healthcare team to make adjustments while ensuring you receive your daily formula and water volumes
MONITORING AND TROUBLESHOOTING SYMPTOM MANAGEMENT
Here are some tips and tricks to deal with common issues:
• Weigh yourself regularly, and report any rapid changes to your healthcare team. This might indicate you are getting too much fluid, or not enough. Gradual weight gain or loss may mean you need to adjust the amount of tube feeding you are receiving
• You may need to increase your fluid intake during warm weather. Fever, vomiting and diarrhea can lead to dehydration. Signs of dehydration include increased thirst, dry mouth or skin, decreased and/ or dark urine, rapid weight loss, headache, lightheadedness, weakness, or flushed skin
• If you have nausea and/or vomiting, you may need to slow down or stop your feeding. Try administering over 10-20 minutes or longer. If you are using a pump, try a slower rate, increasing every two to four hours as nausea improves. If nausea persists, reach out to your healthcare team for help
• If you are experiencing abdominal pain and/or diarrhea, you can also temporarily reduce the amount of tube feeding you are receiving. Medications and medical conditions can contribute to diarrhea, so consult your healthcare team if you have loose stools for more than 24 hours. Call the healthcare team immediately if abdominal pain is severe, or if you have black or bloody stools
• Medications and medical conditions can contribute to constipation or diarrhea. Adjusting medication formulation, fluid intake, using a fiber-enhanced formula or fiber supplement may help. Consult your healthcare team to determine what is most appropriate for you. Your healthcare team may recommend stool softeners, laxatives, suppositories, enemas or anti-diarrhea medications
• Sit upright or keep the head of your bed elevated (30-45 degrees) during feedings. Do not lay flat for at least 30-60 minutes after feedings are complete.
TUBE AND EQUIPMENT TROUBLESHOOTING
You are bound to run into unanswered questions or concerns along the way. Don’t forget, you can always reach out to your healthcare team with questions and assistance. For now, here are some things to know about troubleshooting issues you may run into with your tube or equipment:
• Clogged feeding tubes are commonly due to issues with medication administration, or not flushing the tube properly. Concentrated and homemade formulas can also lead to blockages. Do not mix medicine with formula. Give medicines one at a time. Tablets, liquid medications, and (opened) capsules should all be mixed with an ounce of water for administration. Be sure to flush the tube well with warm water before and after putting anything through your feeding tube. Flush the feeding tube at least once daily even if you are not using it for feeds and every 4-6 hours with continuous feeds. Don’t use carbonated beverages to try and unclog the feeding tube - reach out to your healthcare team about next steps if flushing with warm water doesn’t work.
• Your feeding tube site should not be red, irritated, painful, or leaky once the tract has healed. Check the tube site daily to ensure it stays clean and free of any smells or odors. Report any issues immediately to your healthcare team.
• Use a permanent marker to mark your tube about 1 inch from where the tube enters your abdomen. Check this distance daily. If the tube moves more than 1 inch, contact your healthcare team.
• Formula administration should not be painful. Contact your healthcare team if your stoma site or tube begins to leak, clog, becomes dislodged, or becomes painful or uncomfortable.
• If your feeding tube was placed with sutures, your medical team should let you know how to care for the sutures, if you should expect them to fall out on their own, or if they need to be removed. Dissolvable sutures usually fall out within two weeks of tube placement.
• There are different types of feeding tube connectors such as ENfit™ and legacy connectors. Make note of which type of connector you have so that you can order the appropriate supplies/adaptors and let your healthcare team know if you are admitted to a hospital.
• Develop an emergency plan with your healthcare team including:
- A backup plan to administer your formula should your feeding pump malfunction or become unusable. Some people may be able to use syringes, gravity feeding bags or other feeding devices instead, while others may only be able to use a pump.
- Keeping extra formula, syringes, and other materials on hand that you may need to properly clean and care for your tube in case there is an emergency that restricts your supply delivery. If you find yourself without the proper materials to care for your tube, contact your healthcare team.
• You may find yourself wishing you had more options for better clothing, tools, accessibility, or accommodations.
MOVING FORWARD
Once you feel confident managing your tube feeds independently, there are additional considerations you may think about moving forward.
• When it is time to get your tube replaced, you may have the choice between a standard tube and a low profile tube. You may also have the choice between an ENfit™ or legacy tube. Ask your healthcare team about what is available to you and the best option for your situation.
• Much like changing your dietary patterns when eating by mouth, there may come a time when you want to explore other tube feed formula options. You may even begin considering transition to a home blenderized diet.
•It is important and necessary to discuss this with your healthcare team to ensure the formula meets your medical and nutritional needs and that it is compatible with your tube and feeding supplies.
• If you have been told that you are also able to eat by mouth, it will be important for you to work closely with your healthcare team to determine if there are any changes to be made to your tube feeding plan.
• It is unlikely that your initial tube feeding prescription and plan will be the same for the rest of your life. Work with your team to set goals for weight management, treatment plans, and timelines. Don’t be afraid to ask your team about long-term plans. They will be able to act as resources and help guide you to whatever you would like to accomplish.
CONCLUSION
Throughout your tube feeding journey you will move through many transition periods, have questions, and accomplish many of your goals. Remember, your questions, concerns, and ideas are all important and should be brought to the attention of your healthcare team. Make sure you always know their contact information and who to contact for specific problems. Never hesitate to lean on your resources for help.
ADDITIONAL RESOURCES
Friends and Family Guide to Tube Feeding
