Laughing at My Nightmare

by Shane Burcaw

  When I wake up in the morning, my dad pulls off the Band-Aid and pulls the feeding out of me like he’s starting a lawnmower. For a few hours I feel bloated and disgusting, but not so bad that I don’t repeat the process again and again every single night. This routine is abnormal, even by SMA/feeding tube standards. When kids need feeding tubes, they usually have a surgery to have a permanent little valve created in their stomach.

  I volunteered to do the feeding tube my way for a number of reasons, not only because nasal stimulation gives me a huge boner.

  The decline began back in eleventh grade when I broke my femur and had to stay in that hospital bed for a month. As you’ll remember, I couldn’t eat very well during that month, and although we tried everything from mashed potatoes to a ground up McDouble, I lost some weight during those obnoxious weeks while I was stuck in bed. I might have gained some weight back once I was recovered, but then in my senior year of high school, I got sick during Thanksgiving break and remained sick straight through until Christmas. A few days after Christmas I gave in and allowed my parents to take me to the hospital because I pretty much couldn’t breathe. I was admitted with pneumonia, but once again God/Luck/Fate/Science/Life was on my side and I got better and was released four days later. Unfortunately, I lost eight or nine more pounds during this time, taking me down to about forty-seven pounds. Not good.

  When I went to my yearly checkups that spring at DuPont Hospital, my doctors were not at all happy with my weight. One of my doctors showed me a graph of my weight distributed over time, speaking to me like a child and explaining that the sudden drop off in weight was not a good thing. “What do you think we need to do about this?” she said in a patronizing voice that made me want to throw myself out of my chair.

  “I don’t know, I’ll just try more to eat more I guess,” I desperately said, as I began to feel the tears welling up in my eyes; I knew what was coming next.

  “I think it’s time we think about a feeding tube. You’re going to need one eventually. We need to do the surgery while you’re healthy, before it’s too late.” The condescending tone of her voice made this statement about a thousand times worse.

  I never openly cried in front of other people, but it felt like my whole life was crashing down on top of me. Everything was happening too fast; I was about to graduate high school. The last thing I needed was a huge, life-changing surgery that would effectively change the way I had to live. My doctors and the interns that follow the doctors into every room stood there in silent, awkward disbelief and watched as I put my head down and let the flow of tears fall on to my lap. The thought of having a hole in my stomach and being attached to a bag of nutritional formula every night was the ultimate symbol of losing the fight against my disease, at least in my mind. I couldn’t formulate a single rational thought, all I could think was “No, I don’t need a feeding tube, not yet.”

  I felt pathetic, and there was a really hot intern in the room, which made it all the more embarrassing. Almost immediately I made a decision that crying and bitching was not going to get me anywhere, and as badly as I wanted to scream and never return to that hospital ever again, I calmed myself and listened to the doctors as they explained the feeding tube procedure and what we had to do to get it scheduled before I started college.

  We scheduled the surgery for the middle of the summer. Meanwhile, I tried to gain weight on my own, reasoning that if I could show my doctors that I could get fat by myself, I could delay the surgery a while longer. I found these super-caloric milkshake mixes called ScandiShakes that could only be ordered online for a very expensive price. My family and friends generously rallied behind this idea of mine and helped my parents purchase a bunch of cases. I started drinking two of these 800-calorie milkshakes a day. ScandiShakes are extremely thick and make me want to kill myself every time I finish one, but they are also pretty legit; I gained about three pounds using these shakes, but to my dismay, it was not enough weight to put off the feeding tube.

  People asked me why I didn’t just eat more. I wish it were that easy. At this point, I was getting tired after only a few minutes of chewing. I had to use actual energy to chew, so when I ate, my body was burning calories faster than I could shovel it in. I began to accept that the ScandiShakes were not going to be a miracle solution, and after having some discussions with my friends and family, I came to peace with the fact that a feeding tube was in my best interest.

  But I wasn’t excited about it by any means. In my mind, getting a feeding tube would greatly diminish my freedom to do what I wanted, because I would be forced to adopt some type of overnight feeding schedule when I would be hooked to the feeding machine. I also had this warped idea that I sort of looked like a normal person and that a tube sticking out of my stomach was going to turn me into someone that totally repulsed other people.

  Remember that camp for kids with muscular dystrophy from when I was in the sixth grade? One of the kids in my cabin had a feeding tube, and back then, it scared the shit out of me. While we were sleeping one night, I was woken up by some of the counselors in our cabin making a fuss around this kid’s bed. I looked over, and to my horror, his stomach juices were leaking out of the feeding tube. Somehow his tube had come disconnected from the machine and now formula and stomach acid were pouring out on to the bed. I’m pretty sure I have some deep-rooted scarring from that incident.

  So I had that pleasant memory to contemplate during the hour-long drive down to DuPont Hospital the day before the surgery was scheduled to take place. At this point, I just wanted to get the surgery done with so I could return to enjoying my summer. My friends and family convinced me that while it would be different, a tube sticking out of my stomach was not going to ruin my entire life.

  My dad and I arrived at the hospital and made our way to the pre-surgical ward where I was scheduled to meet the surgeon that would be doing the operation. First, an anesthesiologist with a heavy accent came into the room and told us she would be in charge of putting me to sleep and monitoring my condition during the operation. Then she said that there were some very serious issues we had to discuss before deciding to go through with the procedure. My dad and I both looked at each other with the same “What the hell is she talking about?” expression on our faces. We were under the impression that this surgery was no big deal and that these little pre-surgical meetings were just a formality.

  The anesthesiologist, who had the bedside manners of a dead cow, told me in a very solemn tone that they would have to put a breathing tube down my throat to keep me alive during the surgery, and because of my weak lung muscles, there was a very real chance that when they tried to remove the breathing tube after the operation, my lungs would collapse and essentially I would die. It was such a slap in the face that I almost wanted to argue with her and tell her that I would be fine, but she just continued by telling me that if they felt my lungs would not be able to support themselves, they might have to leave the breathing tube in, “for an extended period of time or even permanently.”

  Seriously, what the fuck? I already had made plans for the day after my surgery, because the doctors that urged me to get it made it seem like it everybody and her sister got feeding tubes and it was no big deal. Now, another doctor was telling me that there was a good chance I would either die or become dependent on life support during this surgery. She ended by telling us that we needed to go home and strongly weigh our options before deciding what we wanted to do. My dad, beginning to get angry by her lack of human emotions, told her that the surgery was already scheduled for tomorrow and questioned why we were not told this information much sooner. Her response was basically a reiteration of her original point as well as hinting that the right decision was to not do the surgery.

  We sat there in disbelief and confusion as the anesthesiologist left and the surgeon walked into the room. The surgeon was much cooler, and I liked him as a person right off the bat. He kind of joked around about the anesthesiologist being creepy with us, which made me
feel much better about the entire ordeal. My dad put me on the examination table, and the surgeon started poking around my stomach and ribs, while explaining to us how he was planning to do the surgery. Out of nowhere he became very serious and told us that because of the way my body was shaped and the position of my stomach, there was a chance that they would not be able to place the feeding tube correctly. He went on to say that while the anesthesiologist might have been unpleasant about the situation, she was correct about everything she had told us. Last, he explained that my doctors were rushing the process by urging the feeding tube right away. He said, “They are not the ones who have to live with themselves if something goes wrong on the operating table.”

  The surgeon sent us home with the same message that the anesthesiologist had given us, to strongly reconsider the feeding tube surgery. My dad and I spent the entire ride home trying to make sense of the entire situation. I probably would have lost my mind had it not been for the McDonald’s Sweet Tea I drank to soothe my nerves.

  After that day at the hospital, my doctors and the surgical staff got into an email battle with both sides trying to convince each other that they were right. There was supposed to be a telephone conference between all of us in August to decide what to do, but that never happened because of a scheduling problem with all of the doctors. The doctor that had originally told me I needed a feeding tube has since retired, and made no attempt to resolve the situation or even contact us before she left. In fact, we didn’t hear from any of those doctors for over a year.

  I met with a new pulmonologist in Delaware the following summer He was a really chill and understanding dude, but I had lost six pounds since my last check-up, bringing my weight to a whopping forty-six pounds, and he and I both knew a feeding tube was really my only option at this point. A few days later he wrote me a very convincing email explaining that he firmly believed, based on my life history and uncommonly high lung-function test scores, that I would have no problem coming off the breathing tube. He also reassured me that my doctors and surgeon were all on the same page this time, and I slowly accepted that a feeding tube was going to be a part of my future. I convinced myself that I would get through the surgery just fine.

  The surgery was scheduled for the fall. At the pre-op meeting, the same surgeon from the previous summer made another complicating discovery. He realized how severe my leg contractures were. When I lie on my back, my legs are stuck in a “sitting” position. How he didn’t notice this very obvious trait of mine last year is beyond me. Anyway, he was intensely troubled by this realization, because he explained, this made doing the surgery the way they had planned next to impossible. My legs would literally be in the way of the instruments that were vital to completing the surgery safely.

  So there I was, lying on the examination table in my boxers, being poked and prodded by my surgeon and a female nurse who was obviously just there to try to get my number, chuckling out loud at how ridiculous my life is. How was this situation not funny? After all the mental gymnastics I’d done to psych myself up for the feeding tube surgery once again, and now I was being told there was another reason not to get it. Fucking fantastic.

  My surgeon left the room and came back with some of his other surgeon friends. They all basically agreed that this new discovery made the surgery much more complicated. Then I had an idea, why not just use a nasal feeding tube? Some of the surgeons laughed when I tossed out the idea.

  “You would have to keep it in your nose all the time, Shane,” someone said.

  “Why couldn’t I just take it out every morning and put it in every night?” I asked.

  The answer was basically because that has never been done before. Inserting a nasal feeding tube is very uncomfortable, surely I wouldn’t want to do that. It suddenly seemed like the most obvious and perfect solution. I could deal with discomfort. I convinced them to let me at least try, arguing that I would most likely bite the dust if we didn’t find a solution soon. They were hesitant, but made arrangements for me to be admitted to the hospital for a week-long crash course in nasal feeding tube insertion.

  When I arrived at the hospital, I had to sign myself in, since it was the first time I was being admitted as an adult. The check-in lady informed me of my rights and told me I could discharge myself at any time. I turned my chair on and said, “Alright, well I’ve had enough. I’m going to head out.” She laughed in that “I-don’t-know-if-this-kid-is-joking-or-mentally-disabled kind of way.

  The check-in lady walked my dad and me up to my room, which to my extreme pleasure did not have anyone else in the other bed. I had a pretty big room all to myself.

  Within the first two hours of being in the room, I was interviewed by a nurse, a nurse-helper, a respiratory therapist, a pulmonologist, a student pulmonologist, a lead doctor-type dude, and a lead doctor-type dude’s helper. They all asked me the same exact questions. Here is how most of the interviews went:

  Doctor: So, Shane, tell me why you’re here today. (I don’t know why they all asked this, as if they didn’t know.)

  Me: I suck at gaining weight and the surgery to do the feeding tube is too dangerous right now, so I’m here to get set up with a nasal feeding tube, blah, blah, blah.

  Doctor: Okay. Cool. So can you describe to me what you eat in a normal day, so we can get a sense of how many calories you normally take in?

  Me: No. That question is too vague. Next question. (Not my real answer.)

  Doctor: So I hear you have a Bi-PAP machine, but you’re having some difficulties with it?

  Me: “Not difficulties, I just don’t use it. (My real answer.)

  Doctor: Okay, well we can work on that while you’re here. Do you have an oxygen machine at home?

  Me: Yup. Don’t use it though.

  Doctor: How about your nebulizer?

  Me: Only when I’m sick.

  Doctor: Do you wear an oxygen monitor when you sleep?

  Me: Have one. Don’t use it.

  Whenever new doctors ran me through this type of interview, they must have wondered if my parents neglected me, because I literally didn’t use any of the normal medical devices that most other kids with SMA use, but the truth was I didn’t need those devices and I was choosing not to use them. Maybe I partially just didn’t want to accept that I needed them.

  The lead doctor explained to me that they were going to take some blood to test my electrolytes and assess my overall level of nutrition, that way they could decide just how careful they needed to be when starting the overnight feedings.

  Unfortunately, all of my veins are complete assholes, so it took the nurse a few stabs in both of my hands before she found a vein that yielded any blood. After that, I had a few hours to chill and eat dinner before they came back to put the feeding tube in for the first time. That night I had meatloaf and mashed potatoes that tasted like construction paper dipped in water.

  Later, the main nurse came in and said she was going to put the feeding tube in. I don’t know why, but I was kind of excited to get it over with. In my head, sliding the feeding tube down my nose into my stomach would be kind of uncomfortable, but nothing that I couldn’t deal with. Wrong!

  The nurse lubed up the end of the tube and stuck it in my right nostril, slowly working it to the back of my nose, and still I thought, “piece of cake!”

  “Now,” she said, “I have to get it past your airway so I need you to start swallowing and keep swallowing until I get it all the way in okay?” My expectations for how difficult it would be to overcome my gag reflex and swallow the tube were extremely flawed. On the first attempt, instead of sliding down my throat, the tube slipped into the back of my mouth, snaking out toward my lips. I choked. The nurse quickly pulled the tube all the way out. By this time I was sobbing, and it was completely involuntarily! I wasn’t upset at all, more pissed than anything. Stick a piece of string into your nose right now and try to swallow it and you will understand why my eyes were watering so uncontrollably.

  We failed in the
same manner on the next three tries. Tube went in, eyes got real wide, demonic gagging noises, expression of panic, tube came out. After the fourth try I had to stop and collect myself for a few minutes. You know the feeling you get right before you throw up, where the world stops and you think, “SHIT, THIS IS IT”? I had that feeling times a hundred, but I was determined not to throw up. I blew the lube out of my nose into a tissue. My mom wiped my eyes, which were on fire at this point, and I mentally prepared myself to try again.

  Finally, after two more failed attempts, I swallowed that son of a bitch into my stomach. But the fun was far from over. I also wildly underestimated how irritating the tube would be once it was in. It felt like there was a tiny animal clawing the walls of my throat every time I swallowed, talked, or moved. Great!

  A tiny voice in the back of my head kept saying, “You’re going to have to do this every fucking night from now on.” I reasoned with myself that the first time was the worst and pretty soon I wouldn’t feel the tube at all. I turned out to be right. Each night in the hospital became a little easier than the last. I started getting good at having the tube put in without gagging, and before I knew it I was home and back to my normal life, with the tiny difference of stopping to put the feeding tube in around 10 p.m. every night. This tube still scratches the back of my throat but I’ve grown accustomed to the feeling. If I don’t focus on it, the feeling disappears and I can sleep comfortably. However, I still choose to take the weekends off to give my nostrils and throat a break. No Feeding Tube Fridays have become a mini-holiday in my mind.

  chapter 34

  the amazing shannon o’connor

  The feeding tube represents a long period of negativity and uncertainty in my life. I was scared and alone and quite fed up with the changes I had to make to continue to thrive. Shortly after becoming accustomed to the feeding tube, in the summer after my junior year, I met a girl who changed my life more than any one person ever has.