What would be different for my child if tube feeding was better understood?

To better understand this question let’s first explore what exactly tube feeding is and how one is tube fed. When tube fed the individual receives all his or her nutrition through a feeding tube. This is also known as enteral nutrition. Enteral nutrition simply is a way to provide nutrition to the body using a tube either through the nose called a nasogastric or ng tube or through the skin into stomach. Feeding tubes through the stomach are either gastrostomy or jejunostomy. 

Gastrostomy or g-tubes are placed through and endoscopic procedure after the doctor makes a small incision through the stomach and stomach wall lining. The feeding tube will be placed to help secure the stoma site and promote healing. Surgery for the feeding tube placement is approximately 30-45 minutes. Once completed if a PEG tube is placed the PEG tube will be secured to the abdomen with tape, and gauze placed around the stoma to help collect drainage. While in the hospital the nurse will help change the gauze then the dietician will help teach you how to change and clean the area. Daily cleaning with soap and water is necessary. The Dietician will also teach you how to eat through the new feeding tube using the new prescribed formula. Finally, the care needed for the new tube will vary based on medical conditions.

Once healed up the PEG tube may be removed and replaced with a short tube such as a MIC-KEY or AMT button allowing for an extension to be attached as needed for feedings. If continual feedings are needed one may receive a jejunostomy or gj-tube. This tube starts outside the stomach and has a long tube that runs directly into the midsection of the small intestine. This tube delivers continual drip of food and medicine and typically last longer than the typical g-tube. Gastric feeding tubes can be both short style or PEG style for enteral feeds.

When receiving tube feeding there are three feeding methods.

·         Gravity Feeds- Gravity feeds can be done using a gravity bag or syringe. With the gravity bag the formula is premeasured and the bag hangs allowing the formula to drip or flow through the tubing into the stomach. When using a syringe, again the formula is premeasure and slowly poured through the syringe and the extension or PEG tubing allowing the formula to flow into the stomach.

·         Syringe Feeds- Using a syringe the formula is premeasured, pulled into the syringe, pushed through the extension or PEG tubing into the stomach.

·         Feeding Pump- When using an electronic pump, the formula is moved through the tubing at a preset and controlled rate. Common enteral feeding pumps include Kangaroo, Zevix, and Infinity Feeding Pumps. Additional enteral pump brands include Patrol, Flocare, and Seepex Extranet.

Feeding rates also vary based off individual need.

·         Bolus feedings are similar to eating a regular meal. Larger portions are given over shorter period, and given several times a day.

·         Continuous/drip feeds are given at a slower rate and over a longer period. This is reserved for individuals unable to tolerate larger volumes.

·         Combination feeds are given for some. For example some may not be able to handle liquids yet can eat solids so liquids are given via the feeding tube. Or others are given bolus feeds during the day and continuous feeds at night to help with weight gain.

Before the usage and medical intervention of feeding tubes, the inability to eat or drink was a serious and life threatening issue. Now this technology impact has improved the lives many people each year. People of all ages, infants, children, adults, and the elderly get feeding tubes and for many different reasons, but all are related to an inability to eat or drink. The feeding tube whether nasal or permanent will stay in place until the individual can eat normally.

How has this knowledge have made life different for our family as we embarked on our journey when the first feeding tube was placed early July 2004 then again in 2005?

When I first learned my son was facing surgery for a feeding tube this knowledge would have been very helpful. However, for our son he was not only facing the PEG placement surgery but also the Nissen fundoplication surgery as well due to severe reflux. This procedure is done because the valve between the stomach and the esophagus is too weak to keep the stomach acids inside the stomach.

At the age of six weeks our son hand the laparoscopic nissen fundoplication or nissen wrap done to reduce his reflux symptoms, then he had PEG placement surgery for enteral feeds. This surgery combination took several hours.

The process for the nissen was to detach the upper portion of the stomach from the spleen, repair the hernia, make an incision around the valve, and wrap the upper portion of the stomach around the valve then stitch in place. The goal is to wrap just tight to secure the valve and prevent the valve from moving both directions and only allowing foods and liquids to only flow into the stomach not back out.

Once the stoma site had healed up the PEG tube was removed and MIC-KEY button was placed in the stoma. Within a few years our son had learned to eat orally and was able to have his g-tube removed and the stoma closed.

October 2004 our youngest was born and also had an NICU stay. After a six week stay we to the Ronal McDonald House for ten days, finally we were allowed to take her home. A few weeks later she was back in the hospital again with severe breathing issues. At this point we discovered she too was having severe reflux issues. She was scheduled for an emergency nissen wrap. At that point while I pushed for the g-tube placement she only had the nissen wrap and was sent home. When we left the hospital this time we left thickening her formula using rice cereal in the haberman bottle.

Shortly after moving to Colorado our daughter had completely stopped eating and developed a phobia towards oral feeds. By this point the only time I had been able to convince her to eat was when she was sleeping and did not realize she has been eating. This time after a swallow study it was proven she was aspirating and all liquids had to be thickened at honey thickness using Simply Thick. We continued to use haberman bottles and started trying to use other bottles as well. During the first hospital stay in Colorado they place an ng-tube which she learned very quickly how to pull out.

At first the staff thought I was removing the ng-tube due to how tiny she was and how many extreme treatments she had in the NICU. At this point it was still expected that she would have severe cognitive delays. The nurse came in replaced the ng-tube, moved the tape from her bed and was preparing to set up the feeding pump. With a huge smile on her face, and a squeal, looking directly at the nurse she grabbed the ng-tube with her pinky finger and purposefully removed her ng-tube while kicking her feet. This process happened 4 times within the next hour. The nursing staff decided that continuous feeds would not be best for her and that she would have an ng-tube placed for each feed and she would have to be placed on a papoose board for each feed. The first time they tried only tying only her hands, but this resulted in her using her toes to remove the ng-tube. Something the nursing staff had never seen before. They left laughing and made arrangements for her to have her g-tube surgery ASAP as it was clear this child would not tolerate the ng-tube period.

Additionally, during this visit when they brought the formula in for the feeds to fill the bag they had to bring the formula in a cup not a bottle as they normally did as she had such a bottle phobia if she would have such severe panic attacks she would actually have tachycardia spells to the point they thought she was starting to code. Her blood pressure and heart rate would rise so high and fast that her O2 levels would plummet and they would have to crank her oxygen levels for a bit. At first the doctor did not believe this was happening until the nurses had the team in the room with a very happy baby and simply walked in with a bottle. All chaos broke out as she nearly coded simply from the doctor trying to get her to drink from a bottle. Later in the day while she was sleeping she had a great feed until she woke up to discover she was drinking from a bottle with the bottle in the doctor’s hand. As the doctor tried to coax her to drink more her reaction grew stronger to the point that the child life specialist had to step in and make the doctor stop before she did code on the team. After that it was approved through the insurance for the Simply Thick, g-tube placement, and home based speech/feeding therapy. With no medical reason to keep her in the hospital until her surgery her dad and I were refreshed how to place and remove the ng-tube and she was released.

For the next couple days we placed the ng-tube for each feed, then sterilized the ng-tube after wards for the next feed as we were only given two ng-tubes to last for three days and all her feeds

After her surgery she first got the PEG-tube and was finally able to get the much needed continuous feeds she desperately needed. We also were able to stop thickening liquids for a short bit. The best part with getting a feeding tube is that our daughter could finally be fed without having panic attacks.

For our kids the feeding tubes have brought a freedom in their lives and allowed them the ability to eat and grow as needed. They have both been able to gain the needed health to endure both procedures and surgeries they both required. The feeding tubes have also increased their overall mental health and self-confidence while teaching both children they can gain control over what they can put in their bodies..