For today, I'm going to make a quick post about his feeding tube equipment. Jayson used to have an NJ feeding tube. He received that tube in March of 2011 and didn't get to remove it until October of 2011. The NJ tube went down his nose, throat, stomach and wound through his intestines. It was taped to his face to keep it in place. Jayson has incredibly sensitive skin and is allergic to the most common tape used, Tegaderm. We had to get special supplies from the wound team to protect his face. We could not easily get those supplies, so we ended up having to buy them out of pocket. This was rather expensive, but worth it. Jayson needed Cavalon wipes to prep and protect the skin, then a cooshy adhesive strip called Mepilex that I would cut to go under his tube to protect his face. We then would put the tube on top of the Mepilex and carefully place the sheet of Mepore clear tape on top. This process was incredibly challenging and required two people. It was tortuous for Jayson because he didn't like anyone touching his face. This tape job would last anywhere from 1-3 days, and the process would need to be repeated again. It was definitely NOT one of my favorite things to do. And with every tape replacement was the chance the tube would be misplaced. If it came out just 1 cm, we would have to go back to the hospital to have it checked by x-ray and possibly replaced (which was another horrific experience). Due to all of this drama, we were excited about the surgically placed GJ tube.
Now that we have a GJ tube, it is not necessarily any easier. We just traded one system for another. Jayson's whole in his stomach is called his stoma. His stoma needs to be cleaned daily. After his bath, I use the Cavalon wipes to remove the old tape and prep the skin for new tape over his stoma. I take off the old gauze and throw it away, and clean the stoma area with Q-tips and sterile water. There is always drainage, sometimes more than other. There is often times some blood as well. Some scar tissue can build up around the stoma, which is painful; it is called granulation tissue. Jayson has some granulation tissue so we are using a prescription cream on it right now. I then place a square of gauze around his stoma and cut a strip of tape to keep it in place. I then replace the tape below which is intended to protect the tube and keep it in place. There are two ways Jayson's GJ tube can come out. It can pull out of his stoma. This would be very bad, as it could tear and perforate his stomach. The long, narrow tube itself can pull out of the unit which is nearly impossible to replace in his current tube (this happened in November). We are ever so protective of his tubie!
Jayson's current GJ tube has two ports. One is a G port going straight to his stomach, and the other is his J port going into his intestines. Right now, he gets everything through his J port. We are hoping that sometime soon we can try some formula and meds in his G port. Up to this point, Jayson has not been able to tolerate food in his stomach. He refluxes and then aspirates the food and reflux into his lungs. That is why we have to have the tube in his intestines. He still refluxes, but not as often and not usually food. This provides protection to his lungs. We have a swallow study scheduled at the end of the month, and we hope that he has improved in his ability to swallow. If so, we will be trying some feeds in his G-port so that we will be closer to removing the tube!
Both the NJ and the GJ tubes have required a feeding pump which we keep in his feeding backpack. One day he can wear this around! The bag itself is replaced every 24 hours and is refilled with his formula throughout the day. The machine is programed to run until the food runs out, and it runs right now at 55 mls per hour. The machine will let us know if there is a kink or clog in the tube, or if the food runs out. Each feeding lasts about 4-5 hours and then we have to refill the back and prime the tube. It easily connects and disconnects from Jayson's feeding tube.
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