Emma’s Story

My transition to being 100% tube fed was quite the challenge. I had struggled with esophageal issues 7 months prior to my first tube placement. At the time of the issues beginning to develop, I was 17, still being a pediatric patient. I told my physician that I was having a little bit of difficulty swallowing and they did a swallow study. Everything came back normal. I still knew something was wrong, but didn't know what was. I ended up transitioning into adult services, and during that transition my difficulties of swallowing became much worse. I told my new physician that I could no longer swallow, and hadn't for over a week at that appointment. He responded that it was okay because I was overweight. I urged him to do an EGG. It was found that the muscles in my esophagus quit working properly. I fought for 6.5 weeks with no nutrition minus IV saline fluids that I'd gotten. I'd gotten admitted to the hospital, and told by two physicians that I was very lucky to not have a heart attack. On my 3rd day of the admission, the new hospitalist wanted to discharge me without a way of getting adequate nutrition. I begged him not to, as my labs were still absolutely terrible and I was still tachycardic. He said it was fine because I was still overweight and once everything is stabilized I'd be discouraged. He kept ignoring me. Thankfully my Mom spoke with him and he changed his mind. After having to advocate so much for the tube itself, actually getting the tube placed was even worse. They put me under cautious sedation, but I never got loopy enough and was fully coherent during the whole procedure. I could also feel every bit of it. I just was strapped to a table watching them cut open my body to shove a tube into my stomach. After going so long without nutrition, my stomach was very sensitive. They attempted to shove several sizes of tubes in, but nothing but a tiny 12fr would fit. It was so traumatizing to go from just hours before believing that I was going to be sent home to die, to then being on an operating table watching them cut me open & shoving tubes in my stomach over and over again because nothing would work. While that was challenging, so was the recovery; both physically and mentally. My body failed me & I had no idea how to cope with that. I wasn't taught how to care for it until my 3rd tube (I've had 8 now!) & the fact mine keep popping frequently (it's mainly my chronic illness that causes it though.) My biggest piece of advice would be to lean on Christ during the difficult times, and trust yourself as you know if something is wrong.