Enteral Feeding (Tube Feeding)
Word of the Week #4
WHAT IS TUBE FEEDING OR ENTERAL FEEDING?
Put simply, tube feeding is a method of feeding available for people who cannot safely eat by mouth. For a variety of reasons, people may find themselves unable to chew and swallow safely, placing them at risk for choking, aspiration, and developing pneumonia. These difficulties may be temporary and related to an injury or illness, or they may be related to underlying health conditions. Whatever the reason, enteral feeding is a life saving measure that allows people of all ages to receive the nutrition they need to survive.
WHAT TYPES OF TUBES ARE THERE?
There are many different kinds of tubes, and they are all named by their location in the body. Typically, the tubes are named both by their place of entry into the body and the place in the digestive system in which they end. For example:
Orogastric (OG Tube: enters through the patient’s mouth, travels down the back of the throat, and ends in the patients stomach
Nasogastric (NG) Tube: enters through the patient’s nose, travels down the back of the throat and ends in the patient’s stomach
Nasojejunal (NJ) Tube: enters through the patient’s nose, travels down the back of the throat, and ends in the patient’s small intestine
Gastric (G) Tube: enters directly into the stomach through a small port in the abdomen; typically called a “button” and has extension tubing that connects to the feeding pump
Gastrojejunal (GJ) Tube: similar to a G-Tube “button,” but it has two ports - one that enters directly into the stomach and one that enters into the small intestine; has extension tubing for both ports that connects to the feeding pump
Jejunostomy (J) Tube: enters directly into small intestine through small port in the abdomen (similar to G-Tube); has extension tubing that connects to the feeding pump
Each of these types of tubes is chosen by the doctor in collaboration with the patient’s caregivers in the hopes of providing the patient with the best possible nutrition given their current deficits and prognosis. A patient’s comorbidities (other medical conditions) may play a role as well.
MARSAILI’S FEEDING TUBE JOURNEY
For example, in Marsaili’s case, she was sedated shortly after birth and placed on a ventilator while we worked to gain control of her seizures in the NICU. When the ventilator was removed, she was given an NG tube. The hope was that she would only have this for a short time and that she would progress with breast and bottle feeding at home. However, due to her diagnoses of Lissencephaly and intractable epilepsy, she was unable to progress in this area.
Marsaili was on the NG-tube for nearly an entire year. Though it was not ideal for her to be on the NG-tube for so long, she tolerated it well. We were able to address other important surgeries, like her shunt placement, before we finally decided to have a G-tube placed. She tolerated the G-tube well, but complications with respiratory illnesses and repeated bouts of aspiration pneumonia after vomiting, ultimately led us to switch to a GJ-tube.
The GJ-tube allows us to give her medications through the G-port (directly to her stomach) and her formula feeds through the J-port (directly to her intestines). This limits the risk of her vomiting and developing pneumonia. It is likely that Marsaili will be on this feeding system for the rest of her life. It is very easy to manage, overall, and we are grateful for the many options that have allowed us to get her the nutrition she needs.
WHAT DOCTOR DO YOU SEE FOR ENTERAL FEEDING?
When a patient receives a feeding tube, they are placed under the care of a doctor called a gastroenterologist. A gastroenterologist specializes in the organs of the digestive system of the body, as well as any medical conditions related to the organs of this system. Your digestive system doesn’t just include your stomach and intestines. The entirety of the digestive system/tract includes the:
mouth
esophagus
gallbladder
pancreas
liver
bile ducts
stomach
small intestine
large intestine
A gastroenterologist may, therefore, treat conditions affecting any of these components of the digestive system.
Before deciding to place a feeding tube, the gastroenterologist may order a study called a barium swallow study. During this test, the patient swallows a liquid containing a substance called barium. The patient is then placed under a special x-ray called a fluoroscope that allows the examiner to study the structure of the patient’s upper digestive tract while they swallow the barium liquid. The test only takes about 30 minutes to perform, and it may be performed routinely to track the progress of a patient’s feeding and swallowing.
Patients on feeding tubes are followed regularly by their gastroenterologist. The frequency of these visits may vary, but could be as frequent as every 3-4 months. These follow ups are important! Patients will need to have their weight checked to be sure they are getting the proper number of calories, and decisions are made at these appointments regarding the effectiveness of the nutrition, tube type, etc.
WHAT DOES A FEEDING ROUTINE LOOK LIKE?
Every patient’s feeding routine is unique to their specific nutritional needs and underlying medical conditions. Some patients are fully fed by their feeding tube, while others may be able to receive part of their nutrition by mouth. Feedings may also vary in frequency and duration. There are different types of feeding schedules including:
Bolus Feeds: Feedings are delivered quickly either through the use of a pump at a set volume and rate or using a syringe or bag and delivering via gravity. These feedings can be as short as 15 minutes, but the longest length is usually 1 hour.
Patients may transition from continuous feeds or cycled feeds to bolus feeding over time. However, bolus feeds are only tolerated when the patient has feeds delivered to the stomach. Bolus feeds are generally not appropriate for tubes and ports that go directly to the intestine.
Continuous Feeds: Feedings delivered through a pump very slowly and continuously to deliver a set volume of food to the patient over the course of a 24 hour period
Cycled Feeds: Similar to continuous feeds, but the feeding interval is shorter, and may range anywhere from 8 to 18 hours per day.
Combination: Some combination of the above methods.
WHAT OTHER EQUIPMENT IS NEEDED FOR ENTERAL FEEDING?
In addition to the feeding port or tube itself, a patient will likely need some or all of the following pieces of equipment for their enteral feeding:
Feeding Pump: There are many brands, but the Kangaroo and the Infinity are probably the most popular pumps on the market for kiddos. We have the EnteralLite Infinity, and we absolutely love it. It’s very small and user-friendly.
Syringes: Patients and caregivers will use multiple syringes for
Feeding Bags: These come in a variety of sizes depending on the patient’s nutritional needs. These are typically sent monthly through the medical supply company.
Formula: Diets vary from patient to patient. Patients may do blended diets that their caregivers make at home, or they may use a formula provided by a medical supply company, or some combination of both. Marsaili is on a formula that is a keto formula and is provided by our medical supply company.
Extension Tubing: These connect the feeding tube ports to the feeding tube bag/pump. These are typically sent monthly through the medical supply company.
Replacement Ports and Tubes: These are typically sent monthly through the medical supply company.
Water-Based Lubricant: Used for inserting new tubes and ports.
Gauze: Used for inserting new tubes and ports or other general use.
Extension Adapters: Used when the tubing for the feeding bag doesn’t fit directly to the extension tubing for the feeding tube. The transition to the En-FIT system required that many patients use extension adaptors while they waited for all of their supplies to be switched and coordinated.
Accessories
Reusable Button Covers: These are the CUTEST covers, and they help so much with protecting the port site for kids with G-tubes, GJ-tubes, J-tubes, or similar ports. These also work great for breastfeeding!
IV Pole with Clamp: This is what we used for several months after we brought Marsaili home. The pump hooked onto the IV pole with a clamp, and the bag hung from the top. It was nice to have, but a huge pain to roll around.
Pump and Bag Hangers: We LOVE our Flying Squirrel pump/bag hanger from Etsy. It is an absolute game changer.
Foam Padding: We like to use foam padding under Marsaili’s tube for when she is on her respiratory vest or when she is doing tummy time. It just takes the pressure off of her tube and makes her more comfortable.
This shop on Etsy also makes special G-tube tummy time pillows. I’ve not used them personally, but they have great reviews.
Backpacks: Typically, medical supply companies will send you a special backpack for your feeding pump and supplies to use when you on-the-go. However, you can buy custom ones all over the internet.
FEEDING TUBE AWARENESS WEEK
Did you know that approximately 1 in 37 children under the age of 5 are affected by pediatric feeding disorder (PFD) (Feeding Matters, 2022)? Experts believe these are conservative estimates, which is why it is important to raise awareness regarding PFD and the ways in which enteral feeding have saved the lives of millions of babies all over the globe.
Feeding Tube Awareness Week occurs worldwide every year during the first week of February. It was first established in 2011 by the Feeding Tube Awareness Foundation. The week serves as a way of celebrating the millions of lives saved by feeding tubes, as well as to educate the public and reduce stigmas surrounding tube feeding.
“The practice of external feeding traces back to the age of Christ. Long before the long blue nozzles of polyurethane perched the bellies of those in need, there were wooden pipes and Egyptian medicine.” (National Today, 2023)
Read more about Feeding Tube Awareness Week, including some frequently asked questions about feeding tubes HERE!
Enteral feeding, or tube feeding, is a life-saving medical advancement and form of nutrition for individuals who cannot safely consume food by mouth due to various medical conditions or circumstances. I hope this post was educational for you. Whether you are the caregiver, loved one, or friend of someone who relies on enteral feeding, I hope these insights will bring us together and allow us to better support one another in this journey.
THE WHY BEHIND “WORD OF THE WEEK”
Parenting children with disabilities and/or medical complexities can be an overwhelming journey. The children we are blessed to parent are miraculously strong, and they are a joy to love. However, the joy and love we experience is experienced in tandem with an incredible amount of stress on a daily basis.
Each day, parents are faced with an endless number of decisions they have to make. When you are a parent of a child with disabilities and/or medical complexities, though, the weight of these decisions often sits more heavily on your shoulders. Why? Because the decisions being made directly impact the very specialized care your child needs to thrive.
My name is Hillary. I am a licensed physical therapist with a doctorate level degree and multiple years of experience working in developmental pediatrics. For years I worked with children with variety of medical complexities, disabilities, and delays in their development and gross motor skills. Shortly after leaving the world of physical therapy, I found out that I was pregnant with our second child, and several months later, I discovered our daughter had many complications.
Our daughter, Marsaili, has Lissencephaly - a rare, terminal neurological disorder characterized by a reduction or absence of folds and grooves in the brain. Even with the background and knowledge that I have from my work as a physical therapist, this road, these decisions, and the amount of information we have to handle on a daily basis is overwhelming. It’s exhausting.
While medical providers often do the best they can to educate, many parents and caregivers still struggle to fully understand the intricate details of the child’s care. This isn’t necessarily because they are incapable of understanding. It may just be because they don’t know what questions to ask or what to advocate for when they are overwhelmed with a million other things. Sometimes you simply don’t know what you don’t know.
That’s what this section of my blog is all about - breaking down parts of this world into easy-to-understand, digestible pieces. It’s about making conversations like this feel like a cup of coffee with a friend (even when the topics discussed are a little heavier). It’s about making you feel like the amazing caregiver that you are - no matter what your educational background is - because you and your child deserve to understand the pieces of the puzzle. You deserve a chance to be your child’s best advocate, because that’s exactly what you are.
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REFERENCES
Feeding tube awareness week. National Today. (2023, August 25). https://nationaltoday.com/feeding-tube-awareness-week/
What is pediatric feeding disorder?. Feeding Matters. (2022, August 2). https://www.feedingmatters.org/what-is-pfd/