Decompression

We recently got a phone call from a family who was struggling with decompressing their child through the feeding tube. I would imagine that most families find little tricks that work best for their child, but in hopes it will help more people, I can share what works for us. We have found that most pediatric surgery offices do little to train their patients and their families with their new feeding tubes. So, with Macayla, we have worked with a Genie, a Bard Button, and now a Mic-Key button. Each has its own advantages. We love the Genie's design, but changing it is painful. The Bard Button was a leaking disaster for us but it is very flush to the skin. The Mic-Key is great because it can be changed out at home with little discomfort and the connectors lock on. There is also an extra port on the connector to push meds through without having to disconnect the feeding pump. It does stick up above the skin more than a Genie or Bard Button.

As far as decompression, we hook a longer connector to her (24 inch) with a 60 cc slip-tip syringe connected to it without its plunger. We lean her back in her chair or lay her back in the bed near the edge. Then we hold the syringe down below her to let gravity take over and draw everything out of the stomach. I do tilt the syringe over enough to help flow but not so much that fluids would spill out of it. Sometimes it helps to have a cup to pour excess in if necessary. However, we have always been advised by our doctors and nutritionist to never dump the fluids that come out because they are much needed electrolytes. We put all the fluids back in. The only exception to this is if we get a bunch of blood out. Typically, if the syringe is getting full and there seems to be more air, I will sit Macayla up and then let the fluid run back in. Then I will tilt her back again and once again lower the syringe down below her to decompress again. Letting the fluids run back in while she is sitting up seems to help reposition the air closer to the tube. We sometimes push on Macayla's stomach gently to assist the air out. We point the open end of the syringe away from us as Macayla has sneezed before during decompression and it turns the syringe into a mini-canon that fires stomach contents! Yeah, it's gross. We have found that Macayla needs to be decompressed before every feeding and sometimes between feedings.

Cleaning Tubes

On the Parent-2-Parent forum, there are tons of helpful hints from parents on feeding tube stuff. One of the things we struggle with is keeping the feeding tube connectors clean so that they last. By feeding tube connector I mean the tube you connect to the feeding tube button. They are usually 12 or 24 inches long and are designed for the specific button you have (Mic-Key, Genie, Wizard, Bard Button, etc.) One of the suggestions on the forum was to pour some liquid soap in the connector tube and then use the back of a knife and your thumb to pinch the tube. Then you pull the tube through, running it between the knife and thumb much like the way one would curl ribbons on a present. This works but I always worry I may pull the end of the tube off. I have found that I can simply pour the soap in the tube and let it slowly run its course through the tube. Then I turn the tube over and let it drain the other way and repeat it and rinse it out well. It seems to get out all the gunk. 

Granulation

We are fighting the granulation battle with Macayla's feeding tube. For those unfamiliar with granulation, it is tissue that builds around the feeding tube that is caused by the body trying to heal the tube site closed. It is red, meaty, and oozes and bleeds. It can be mistaken for an infection. The red tissue grows out in all directions and forms a rough ring around the site. It is prone to bleeding. For almost six months last year we lived with constant blood in Macayla's stomach, low feeding tolerance, and much discomfort. She had granulation on the inside of her stomach at the site as well as on the outside. We often must use silver nitrate sticks to cauterize the granulation tissue. We have used a nystatin cream around the site and it helps to control it, but we never get rid of it completely. Macayla's site should be similar to an ear piercing that has healed. It should be clear skin around the site. There are some recommendations by parents on Parent-2-Parent forums about different mixtures of creams and ointments that have helped. But every child is different and will respond differently to a given treatment. Doctors should be consulted about anything used around the site, but often a doctor's office can become ineffective. Parents have found many things that work that doctors would never suggest. We are fortunate that most of our doctors and nurses are willing to try many things. The surgeons want us to stay away from a wound-care specialist because wound-care can create granulation that is out control. We have not tried every suggestion yet on Macayla, but the things we have tried have had minimal or no success so far.