Happy Day 4 of Feeding Tube Awareness Week!
I have been reflecting on the journey leading up to David’s feeding tube, and I can’t help but feel a sense of pride for how far my family and I have come. The feeding tube is only a small part of David’s story, and in fact has been one of the greatest gifts in his medical history. It has truly been a lifesaver. But I didn’t always think so fondly about the tube, didn’t use cute nicknames like “tubie,” and certainly didn’t view it with the gratitude that I do now.
During a routine visit with David’s GI doctor back in November of 2016, she suggested that he may need a feeding tube “one day.” This news hit me like a punch in the face. I internalized it as a personal failure, that despite all of our efforts, we could not “fix” his gastrointestinal tract. Despite the hours spent in the middle of the night trying to get him to drink his formula, the agonizing over lab results and nutritional deficiencies, and the hundreds of dollars spent on various foods and formulas, we felt our hopes slashed because, time after time, his little body simply could not tolerate those foods and formulas. Nothing we were doing could help our son’s gastrointestinal tract absorb nutrients or help him gain weight. I was beaten down by a sense of failure.
But it was more than just failure. It was fear, too. A feeding tube meant surgery, which meant anesthesia. My son’s medical conditions leave me in fear of how he will react to different drugs and procedures. He had one very scary reaction post-anesthesia when he was only 8 months old, and I will never be able to shake that experience from my memory. There was also the fear of change. How will we adapt to a feeding tube? Will it hurt? Will it always hurt? Will I know how to fix it? Will this mean that John and I are the only two people now qualified to help him? And lastly, there was sadness. I did not see a feeding tube as a life saving device we were proving for him. Instead, I saw it as something we were doing to him, which tore me up inside.
When I left that doctor’s visit, I cried harder than I had cried in a very long time. And then I became resolute. “No way will he need a feeding tube! I will fix this.” Over the following 8 months, John and I doubled down on our efforts to find foods that he could tolerate, that would reverse his nutritional deficiencies. Hemp hearts, high in the essential fatty acids my son lacked, proved to be something his gut could tolerate. It was also extremely versatile. We made it into cake, milk, bread, crackers, granola, and even ice cream. He loved it. We also added flax seeds as a great source of Omega 3s. Our optimism was high in the spring of 2017 – he would not need a feeding tube if he kept up at this pace!
Summer 2017 was the turning point, for several reasons. First, we got lab results back. We were expecting his nutritional deficiencies to be reversed, or at the very least, on the road to recovery, due to the hemp and flax. The result? No change. His body was not absorbing the nutrients, so no amount of hemp or flax would help him reverse his deficiencies. Second, his body began reacting negatively to both hemp and flax, treating them like allergens that made him sick. What were once his go-to foods became off-limits mast cell triggers. Lastly was his declining oral intake of his formula. Between daytime feeds and middle-of-the-night “dream” feeds, he was supposed to drink 32 oz of his formula each day. As the summer rolled on, his distaste for the formula grew, resulting in him refusing the bottle at night (pushing it away in his sleep), and then gradually drinking less and less during the day. By the end of September, we were lucky to get 22 oz in him each day.
The first week of October marked a dramatic shift, in which David essentially refused his formula day and night. John was out of town on business, and I was desperately chasing David around the house with his formula, begging him to have even one sip. October 3, he drank 15 oz – less than half of his recommended oral intake. After talking with John that night, I called the GI doctor’s office with a new mindset and a new goal: it was time for the feeding tube.
We saw his GI doctor, who agreed with us that he urgently needed a feeding tube, with his nutritional deficiencies, reduced oral intake, and free-falling weight percentile. He was admitted on October 9, and at noon on October 10, 2017, David underwent a surgical procedure to place a permanent feeding tube called a gastrostomy tube, or g-tube.
The following days and weeks were chaotic. He was in terrible pain at the surgical site. His mast cell disease and gastroparesis (slowed stomach emptying) were badly flared, causing him to be sick multiple times a day. We also struggled to figure out how best to feed him with the tube. It seemed like everything was trial and error, but unfortunately, error meant our poor boy in severe pain, throwing up several times during the day and night. Six weeks after surgery, we were finally able to better manage his pain at the stoma (feeding tube site) with a cream prescribed by the surgeon. A few weeks after that, a friend showed us how to use the tube to reduce gas build-up in his stomach – a simple, painless procedure that brought him greater comfort and reduced instances of vomiting each day. And a few weeks after that, we took another friend’s advice, changing the rate of feeds to a much slower rate, which all but solved his remaining pain and vomiting. Things were finally falling into place, except one glaring challenge.
David’s formula was no longer a tolerated source of nutrition. We already knew he was not absorbing the fat and some essential vitamins from the formula, but the constant mast cell activation that resulted from the surgery led to David’s body flat-out rejecting his formula. If we could not get him a formula (and especially a fat source) that his body could tolerate, then he would require a different surgery to insert a line into his bloodstream for IV nutrition.
Again, John and I were resolute: he just got this feeding tube. No way are we giving up that easy!
The feeding tube provided an avenue for trying different formulas without David needing to drink them. Most of the hypoallergenic formulas tasted badly, and we knew he would not be interested in trying any of them orally. When we found one that he seemed to be tolerating in small amounts, we carefully but aggressively transitioned him onto it. His doctors guided us in increasing the antihistamine dosing, so his body would be less likely to react to the new formula. He did react to the new formula, but the reactions were all relatively tolerable compared to the alternative (another surgery and IV nutrition). We eventually fully transitioned him onto Elecare Jr., a hypoallergenic formula, and he immediately began to gain weight. In addition, four months later, lab results confirmed that he no longer suffered from any nutritional deficiencies!
While our tube-feeding journey started out with pain, fear, sadness, and illness, our appreciation for it grew from the realization that his feeding tube was a gift of health and life. Because of his tube, we no longer need to worry about weight gain or nutritional deficiencies. We do not know what the future holds, how long he will have his tube, how long his body will tolerate this particular formula, or how his conditions will change over time. But for now, we are deeply grateful for his tubie while we have it, and for the medical team that helped us make the decision to give one to him.