The No Good, Very Bad, Kind Day

My name was called and I was wheeled into a colorful room with both parents at my side. The walls were completely decorated as if we were under the sea. A big table in the middle of the room with X-ray machines around it foreshadowed my scheduled experience. I have had 3 “upper GI” tests prior to this one. Each time the radiologist looked concerned and suspected he may have a diagnostic reason for my inability to digest food and a reason for why I retch violently after the consumption of food or liquid. This fourth test was supposed to be a final look at my duodenum (the first part of the intestines, just after the stomach) before determining the best course of action for surgery or alternatives.

One thing that made this day very different from all the others was the plan to change out my feeding tube, which had never been done before. My doctor told me to have a GI fellow on-call paged to switch that out for me right in the radiology room before my test, while I was awake. Over the preceding months, I had some severe complications with my GJ feeding tube. Many times throughout the day, I would start to have an episode of movement occurring in my tube (also called a button). In response to what felt like peristalsis (the movement of digestion that pushes food throughout your intestinal track), the tube would be sucked further into my stomach and then forced back out 15-20 seconds later. That popping process would repeat for hours. The only thing that seemed to stop the process fairly quickly was to eat something. It took the focus away from the downward pulling on the distal portion of my jejunal tube. Unfortunately, eating was not always the best treatment, or even possible, considering my condition. Each time my button popped, it became more and more painful. It would stop me in my tracks, in the middle of a conversation or even in my sleep. I developed a wound on the outside of my belly around the tube, where it was literally tearing my skin. As the problem worsened and my abdomen bled, I developed a gastric ulcer on the inside right up against the button as well. For months, I tried to call this to the attention of my doctors and my surgeon. No one had ever seen anything like it. Nor did they have many ideas on how to fix it. There is no reason my medical interventions should be causing even more medical problems and pain. Once again, not the kind of medical history I hoped to be making. When I was admitted to the hospital in September, many of the doctors developed the idea that this problem was caused by muscle spasms in my abdominal wall. As much as I trust and believe in all of them, I knew that based on what that sensation felt like to me, that simply was not the case. It felt like the peristalsis idea. With the help of my home care nurse, I brainstormed that if my feeding tube only went into my stomach, instead of also having a port down into my jejunem, it may not be able to pull as much from the site in which it is anchored in my abdomen. This would be a fairly easy fix by removing my GJ tube and replacing it with a G tube. I brought this personal idea up to my GI Doctor, and for lack of any better ideas, he agreed to humor me by trying this. Thus, we scheduled to have this take place at the same time as my Upper GI study.

When we got settled into the ocean-themed room and I changed into a child size, cartoon panda covered hospital gown, I then had to begin explaining to each of the techs that they needed to page a GI fellow to replace my feeding tube before the test could begin. Naturally, this had not been well communicated prior to my arrival. We were told we’d have to wait, but to my surprise, they allowed us to stay in the room. Despite the seaside environment, the wifi signal was strong and each of us became engulfed in our own worlds. Not long into our hand held technology ritual, the head of radiology came in and offered my parents coffee. Even though I could not drink, I was happy that Ma and Pa were taken care of. She even brought back a choice of flavored creamers for Pa to pick from! A little while later a younger girl came in to check on all of us and brought me a warm blanket just in case I was cold. One after another, health care professionals came in and apologized for our wait (which I honestly did not mind because it was not their fault in the slightest). After almost 2 hours, my very own GI physician came into the room to remove my feeding tube himself. I was so pleased and comforted to see his familiar face. Not pleased for long, however. The tube removal involved first deflating the balloon that holds the tube in place in my belly, and then a hard, long yank out through my abdomen. Considering the wound I had developed around that site, this was one of the top 5 most painful things I have ever experienced. After that torture was over, the new G tube had to be inserted and the balloon inflated. All of which perpetuated my tears, which in turn upset my doctor who never wants to do me any harm. As my doctor held pressure on my bleeding abdomen, we talked briefly, about if this idea worked by eliminating or at least decreasing the popping problem and what to do if it did not. If my idea did not improve matters, it would not be worth it to struggle with the challenges I would face with having a single port G tube, as opposed to the double port GJ (one for medications and one for gastric drainage removal). Placing a GJ is a much bigger ordeal than placing a G tube while I am awake. The GJ has to be placed using interventional radiology with a sedated patient. My doctor was taking a risk by allowing me to try this whim, because if I was wrong, I would require surgery.

Before: GJ // After: G        How can something so small cause so much pain?

Now that I had a fresh new button in place, I hooked up my own extension tubing, and the radiologist came in promptly to initiate the long awaited test. The young girl who had given me the warm blanket earlier, administered about 90mL of contrast dye through my G tube, into my stomach. Many pictures and continuous motions were taken to watch the movement of the dye from my stomach into my duodenum. After only a few minutes, I began retching. It started out light and quiet, but quickly turned into aggressive, chest-raising, exhausting retching. I lay on the cold, hard table and turned gingerly onto different sides according to my instructions, all the while continuing to retch and gag. Standing on the other side of the big machine taking images of my stomach, the girl reached her led-free, exposed arm under the machine to grab my hand. With each gut reaching dry heave, my freshly irritated abdomen grew more sore and continued to bleed. “Just squeeze me tight,” the sweet technician said. As she looked into my face, her eyes lit up and she mentioned the hospital I worked at and asked if I was a nurse. It turns out, she had assisted on my case earlier in the spring for one of my other Upper GIs. I can imagine that an adult nurse being treated at a Children’s hospital for an unknown disease that causes instant retching in response to the presence of anything in the stomach, would be pretty unforgettable. She was shocked to hear that I am still undiagnosed and going on 11 months of incapacitation (as am I; I never get used to this). This conversation prompted the radiologist himself to recall my case as well. He was also shocked, but for a different reason. Despite the problems displayed on the previous 3 tests, this one looked normal. That makes absolutely no sense. I had a visible reaction throughout the entire study and this possible abnormality was our only GI lead. For most people, hearing that test results are normal is a positive, happy thing. But for a girl who has gone 11 months without answers and has been kept from the life she loved for nearly a year, normal test results are a bit*h.

While we are back to the drawing board for diagnostic ideas, at least I found this out before having a huge, irreversible intestinal surgery to fix a problem that is no longer visible on scans. As I began to sit up and change, my new friend, the tech, told me she was going to find me a prize in the back because of my strength and bravery throughout this long journey. She mentioned that most things were for little kids but that she would find something. I assumed she was going to look for a sticker that did not have Dora on it. I couldn’t believe it when she came back carrying the most beautiful throw blanket, wrapped with a bow, and two sets of colorful magnets. After the roller coaster of a morning I had just had, I now felt like I had won the lottery. Her kindness blew me away and I couldn’t help but smile. Every single person in that office had been cheerful, kind, sweet, helpful, warm, and full of compliments for my sparkly shoes. I left the hospital from a terrible appointment, in a great deal of pain, and yet, I felt happy. Happy for the kindness in the world– kindness that was directly given to me and my family all morning long. In fact, it didn’t stop there. On the way home we stopped at a local bakery. For those of you who know me well, you know that the one main thing that can cheer me up and distract me from pain is looking around in a bakery (and of course eating the desserts too). Pa kept the car idling while Ma and I “ran” in to order lunch and dessert. I instantly felt calm and excited in there amidst the macaroons, cheesecakes, and baguettes. They were bustling with customers, there was no where to sit, and the employee looked quite frazzled. Ma and I ordered the one vegetarian lunch option that my limited diet allowed me to have, and they were out. We quickly realized we could not have lunch from there, but would only be able to get a few macaroons for dessert. The employee looked at us and her scowl melted right off her face. She apologized perfusely and shot us each a bright, kind smile. It was as if the universe suddenly realize how difficult things had become for me and in return, it showed its kindest side. The very best of humanity was showing for me that day, which was exactly what I needed.

The outcome of the feeding tube switch was expected to be apparent within 24 hours. During that time I never uncrossed my fingers. At this point, I can tell that the replacement was by far, worth it! My button has popped a few times each day, which is significantly decreased in frequency, and each “pop” is about 5% of what it used to be in terms of aggression. The type of popping that seems to occur now is gentle enough to not be expected to cause a gastric ulcer or significant trauma to my skin. It went from being one of my biggest daily problems, to nothing more than a nuisance. Part of me was really frustrated that none of the doctors came up with any kind of plan while I suffered with this never-before-seen problem since the day it was surgically placed in June. It should not be the patient’s job to come up with a life-changing idea. At least that’s what I thought yesterday. My mindset has changed (imagine that!). This is an incredibly baffling case for everyone involved. Much of what has happened to me is utterly unprecedented. Because of that, there really is no manual or protocol to follow. All the healthcare professionals on my case have been and are confused and desperate for ideas. Lucky for me, I am a nurse. Whether or not I am able to practice today or tomorrow, I am licensed and I am a nurse. Even though I suffer from significant memory loss that comes and goes, the mindset I acquired throughout my 4 years in nursing school and time spent at my nursing job in the ICU, is very much still present. I have tons of important knowledge from that and additionally, I am the one going through all of these changes and symptoms. I know better than anybody what these things feel like that are happening to me. I knew that popping phenomenon was not a series of muscle spasms. And I am grateful to have a doctor who is willing to listen to me, trust me, and treat me like the nurse that I am. Rather than being upset that I was the one who finally had to figure something out for myself, I am happy that I can work as a team with my healthcare professionals to change my care to fit my needs. And maybe even help to initiate a protocol for any patient in the future that faces a similar problem. This was one small step that helped fix a problem caused by an intervention (the feeding tube), with miles more steps that need to be taken to diagnose, treat, and hopefully cure me. But no matter how small this step was, I helped my team and myself. That day I stared into some of the darkest corners of the universe and saw Kindness staring back. xox