“The Feeding Tube Post” -Nathan

Good day friends! For this blog, I thought I would write about something I have been asked about several times, the feeding tube. It goes by many names, ranging from G-tube to Peg or Mic-key, but they all do pretty much the same thing, and in my opinion, that thing is to provide an amazing way to deliver nourishment to my boys. Now before I go further, I have to give the request warning that I am in no way, shape, or form a medical professional. I do not intend for this blog to convey medical advice or a course of treatment. Rather, I would like to tell everyone how we wound up being a “tubie” family, what benefits and challenges we have faced, and finally, I will add a little advice that I think would be helpful for everyone to know.

First things first, how did we end up having three boys with G-tubes? Well, as many know, our ten-year-old son, Elijah, has led the way regarding medical treatments for all of our CTD boys. In the case of feeding and weight gain, this trailblazing was certainly no easy journey. From birth, Elijah had extreme difficulty keeping any nourishment in his stomach. After trying all the basics, from breastmilk to just about every commercial formula out there, the doctors got involved, and we started moving through the list of fancy, non-commercial formulas. Although none of these stopped the stomach emptying problems, we finally settled on the best one we could find and waited for the weight gains to roll in. Not surprisingly, this never happened. What did happen over the next couple of years was that Elijah became increasingly weak, continued on the path of very minimal weight gain and, as with any child who is always hungry, became increasingly moody. Along with these other symptoms, Elijah was increasingly susceptible to illnesses. As his little body struggled to get nutrition, even the most basic stomach bug would send Elijah to the hospital for several days. We knew that something had to change, and as Elijah was once again admitted to the hospital for an illness, change finally started to happen.

During that three-week hospitalization, the medical team finally realized that something had to be done. Unfortunately, Elijah was already pretty weak, so the process wasn’t exactly fast or easy. First, Elijah had an NG tube placed to test his ability to tolerate a feeding tube. An NG tube, as many might know, is a feeding tube placed down the nose to the stomach. As you might guess, Elijah wasn’t a big fan of this, but he tolerated it, and he found himself in surgery to place the g-tube. Several days later Elijah was released, and we slowly learned the processes required of this new lifestyle. Now, it should be said that his tube didn’t solve his problems. Elijah still emptied his stomach on a very regular basis, but little by little, the feeding tube and the feeds that went with it allowed Elijah to gain the slightest bit of weight to allow him to increasingly stay out of the hospital. Simon and Ezra received their tubes much earlier and with a much shorter hospital stay, but the impact has been no less impactful. This all sounds rather simple, doesn’t it? I mean the hospital visits are a pain, but it appears to be a case of identifying and implementing a solution to a problem. Well, that fails to take into consideration the hardest part of the feeding tube, the emotional aspect.

Putting a tube directly into the stomach of your child is a big step. As a parent, you risk feeling like a complete failure. You hear criticism and “advice” from just about everyone around you. Most of this wisdom involves some version of the line that every child will eventually eat when they are hungry. We took these comments, combined them with our own feelings of fear, failure, and potential loss, and it really got us a bit down for a short period of time. It didn’t last long though, because we quickly realized that this was without a doubt the right decision for Elijah. Without the support system we currently have in place, Jennifer and I leaned on each other more and more as we pushed back against the constant jabs. In addition to the judgment, having a child with a feeding tube can be somewhat overwhelming at first. Medications, feeds, cleaning, and maintenance all require a level of consistency and routine that we had never known, but we learned fast. We learned that Elijah really did need this, we learned that WE really needed this. It took us a few years to see just how serious the situation with Elijah was, and just how much good the feeding tube had done for him, but the biggest indicator of success was seeing how Simon and Ezra were able to avoid many of Elijah’s struggles by simply receiving this much-needed device early on in their treatment.

Now, as I wrap this up, I want to give a little unsolicited advice to anyone who may find themselves in a position to give guidance or opinion on feeding or feeding tubes, knowing full well that a large portion of those who read this will certainly know this already. If you happen to find yourself in a situation to talk to someone who is working through serious weight gain, feeding, or nutrition-related problems, and the potential of a feeding tube is brought up, please remember these two things. First and foremost be supportive and secondly be empathetic. Do not, under any circumstances, allow yourself to convey the idea that all kids will eat when they are ready, or that the parent is simply “doing something wrong.” Commenting on how “normal” the child looks or giving feeding tips to the parents is usually less than appreciated. When I see someone in the emotional struggle that we were in, and someone tosses one of these gems their way, I have to bite my tongue. I understand that this advice is usually given in a well-meaning way, but sometimes advice can simply cause more turmoil. What I do suggest is asking questions. I know it can be a bit awkward, but I personally welcome questions. My one takeaway from all the experiences that I have had with tubies is that while a feeding tube may not be right for everyone, it can be an absolute life-saver for those who really need it.

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Disclaimer: All thoughts and ideas expressed in the Creatine Community Blog represent the individual blog contributor's opinions and not those of the Association for Creatine Deficiencies. The ideas expressed in the Creatine Community Blog, and any other locations on the creatineinfo.org website, should never be construed as medical advice, even if the information relates to actual health care experiences of the contributor. Individuals should always follow the instructions of their physician and make no changes to their care unless instructed to do so by their physician.