Without a Crystal Ball

Our Journey through Chronic Illness & Autism

This week marks the week where we bring awareness to a different type of feeding. According to Feeding Tube Awareness Non-Profit, there are an estimated 500,000 people in the United States have feeding tubes. In their research they found the pediatric community encompasses 20% of all patients with feeding tubes, and they have identified more than 300 conditions that may require a child to need nutritional support through a feeding tube.

In the past 4 years we have run the gamut of being on and off a tube. At birth our son had a nasogastric tube or NG tube. This is a tube that runs through the nasal cavity, down the throat and esophagus and in to the stomach.This method is often used when the the tube is going to be used for a short period of time. Many babies will have a ng tube at birth if they have trouble latching, swallowing, or sucking. Our son had all of these issues. The NG was used to enable him to learn to suck, swallow and breathe.

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NG Tube used for Feeding in a Premature Baby

Most children will wean off the NG tube. We were able to wean off this tube within about 6 weeks. Graduating from this tubes is nice for the patient as they no longer have to deal with the tube running through their nose and throat. Graduation doesn’t always mean a patient will be done with a feeding tube though. Many patients will use different forms of feeding tubes at various times in life.

Our next experience with the feeding tube was at 3 months old. Our child was critically ill, and he was unable to digest or tolerate any food. Any amount of food in his body was causing his lungs and organs stress. At this time, our son was on a form of feeding tube that bypasses the Gastrointestinal track.  Total Parenteral Nutrition, or TPN, is a method used when patients cannot (for whatever reason) digest food in their digestive tracks. In order to deliver this method, the doctors had to place a peripherally inserted central catheter or PICC line for short. Our sons line was placed on his jugular vein in his neck. PICC lines are used for numerous reasons. Our son’s was used for nutrition and medications while he was on life support. Through the PICC the TPN was delivered to him for several days. TPN was life saving for him while his body fought a critical illness. It is typically a short term solution for most patients and babies. Though some patients will rely on TPN for a much longer time.

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Picture of  a Central (PICC) line in an arm

When he graduated from TPN, we were able to place a nasojejunal tube or NJ tube in to his nasal cavity. The NJ is like the NG but instead of the tube being placed in to the stomach it goes in to the small intestines. During critical illness his stomach was shut down and unable to digest. The NJ enabled us to bypass his stomach and feed him directly to the intestines. Feeds that go this method typically have to given a slower pace than through a NG tube. NJ’s are ideal for any patient that is unable to digest via the stomach while still giving them nutrition in to the digestive track. There are many reasons a patient would end up using a NJ feeding tube, and for our son it was a life sustainer as he recovered from his critical illness.

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Our Child on using a NJ tube for nutrition

For several years following the critical illness, our child was able to do well on his own. He learned to suck, swallow and breathe. He was able to breastfeed, use a sippy cup, and learned to suck from a straw. Unfortunately, he was unable to learn to effectively chew and swallow solid food. As he grew older, his caloric needs increased but he was still only able to manage calories needed for a much smaller child. Most days he was eating less than 500 calories via food and the bulk of his calories were milk or a high calorie nutritional supplement like Pediasure. This worked for a while, but over time malnutrition became evident to both us and his doctors. He began losing weight, his skills were stalled, and he was falling further and further behind in development. There are many signs of malnutrition in children and a full list here. For our child, he had low energy, difficulty learning, decaying teeth, he was underweight, shorter than normal for his age, had a bloated stomach, a poor immune system, and a poor attention span. This impacted every aspect of our day as play was difficult, he had little to no language or ability to speak, and his attention span to learn was very poor. After months of debating what to do, we finally made the decision to place a Percutaneous endoscopic gastrostomy or PEG tube.

The PEG was a short term solution so the doctor could insert the tube without having to do major abdominal surgery. She was able to drop the PEG down his throat via a Endoscopic procedure. The peg was placed and then secured to the stomach wall with a small stoma opening on his abdomen. While the stoma healed, we had the PEG. The PEG has a long tube that comes out of the stomach, and it is hooked up to an extension to feed the patient.

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Patient with a PEG feeding tube

After his stoma was healed, we were able to replace the PEG with a MIC-KEY button. This is a small button that can then be attached to a longer attachment. The button enables a patient with a feeding tube to have more freedom and fewer items hanging off the abdomen. For my son, it meant we no longer had to tape down the PEG tube to his skin. He was able to move about with more freedom. When it is time for him to be fed, we attach a 12 or 24 inch extension which hooks directly in to the port of the button. When he is down eating, we unhook the extension and he is free to move around with nothing hanging from his stomach. For many with feeding tubes that are directly in the stomach this is the ideal feeding method. Buttons can be placed in either the stomach or the intestines. Much like the nasal feeding tubes there are two options for stomach buttons. Patients that cannot tolerate food in their stomachs can be fed directly in to their intestines. Since our child can tolerate food in this stomach, we are able to the the G-tube instead of a J-tube.

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Our son pictured with his Mic-key button

With all feeding methods the goal is nutrition for the patient. Most patients will eventually graduate from feeding tubes and while others may always rely on a feeding tube in some capacity. Most patients will not have a defined timeline of how long the tube will be needed. However, the goal is to eventually help the patient obtain skills to eat by mouth. If this is not an option for the patient, the feeding tube becomes primary source of nutrition. What most of us in this community want you to know is that feeding isn’t the same for all people. There are babies that are breastfed, bottle fed, and tube fed. There are children that eat by mouth or are fed by tube. However, the one thing we want you to know more than anything is that Fed is the best way to be.

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