By December, my dehydration and malnutrition had become severe. The saline infusions I received twice a week were not enough to make up for the lack of food and water I was taking in by mouth throughout the week. Between my severe malnutrition and dehydration, and my increasing pain level, my doctor, family, and I decided I would be admitted to the hospital and have a type of feeding tube placed called a nasogastric tube, or NG tube. An NG tube is a small, bendy plastic tube that passes through the nose, down the throat, and into the stomach, through which formula will drip slowly from a pump. The plan was to use this tube as my main source of nutrition.
I was terrified for this change. I was scared of the tube placement, having a tube taped to my face, and having to live with a feeding tube. But on December 12, I went through the ER and was admitted to the hospital. I spent the first day getting IV fluids and planned to have the tube placed on the 13th. My GI doctor wanted the placement to be the least nerve-racking experience that it could be for me, so he decided that I would attempt to place my own tube, while he did the same. He wanted to show me that we could get through it together. I found it easy to get it past my nose, but as soon as it hit my throat, I choked and would pull it out. It helped to see my doctor eventually place his own tube, but after an hour of failed attempts, I had my doctor place my tube for me.
A few hours later, it was time to start the tube feeds. I started at a rate of 10 ml/hour. This means that under a tablespoon over formula would be delivered to my stomach over an hour. This is a rate that even a baby should be able to tolerate. But I couldn’t. Within half an hour of starting the feeds, I was screaming in pain. It felt the same as it did when I ate by mouth. This did not make sense to anyone. There was such as small amount being fed that it should have gone in without a problem. With the help of morphine, I managed to tolerate a few hours of feeds and got my bloodwork done the following morning. Unfortunately, my bloodwork was beginning to show signs of refeeding syndrome. Refeeding syndrome occurs when nutrients are reintroduced after a long period of starvation, causing a massive shift in electrolytes. It can be very dangerous. We now had two problems: refeeding syndrome and my extreme pain with feeds.
Before we could begin to address these issues, my mom received a call. It was from the Mayo Clinic in Jacksonville, Florida. They were willing to see me. There was just one issue: we needed to be to Florida the following day. So, we made the decision with my doctors to discharge me from the hospital, extremely unstable and still with no source of nutrition, but with a chance to figure out why I was so sick.
We flew down to Mayo Clinic in Jacksonville, Florida the next morning, eager to attend my appointment with a GI doctor there. However, as soon as he walked into the room, he told me that I wouldn’t like what he had to say and that there was nothing wrong with me. I was stunned. He had looked at me, with a tube taped to my face, and told me he wouldn’t help me. He said there were no more tests to run and that I just had functional abdominal pain and needed to learn to breathe through the pain. We left that room completely confused, stunned, and heartbroken, and returned home to Charlotte.
The next day, we went to an appointment with my GI doctor, where he too told me that we were out of tests and that it was time to work on learning to live with the pain and stop looking for the cause. I will never forget how I felt leaving his office that day, completely defeated and hopeless.
I attempted tube feeds for a few more days but could never tolerate them at a rate above 20 ml/hour. I was in constant, horrible pain the entire time they were running. Luckily for me, the tube clogged a few days later. We decided to remove it and went back to saline infusions and eating as much as I could by mouth.
I spent Christmas and New Year’s the saddest and most hopeless that I had ever felt. But despite being told by doctors that we would never find the source of my pain, I never stopped doing my own research. I wouldn’t give up.
Kate's Courage 