Throughout the summer, my symptoms were somewhat under control. Although I still had a steady migraine and constant dull nausea, I was able to hang out with friends, go on a couple of trips, and have fun. Nevertheless, I became exhausted a lot quicker than I did before all this. It seemed I could only plan one activity a day rather than packing each day completely full as I had done in my past. However, being able to walk and function made me grateful.
The stomach pain resulted in me eating less and less. Eating had negative consequences in the short term and long term. Most foods I ate, I couldn’t keep down; vomiting made me jerk my neck, flaring up my symptoms. Then, as a result, spending time with friends was not a possibility and instead, I would have to nap in a dark room, curled up in pain. So, I started eating less and less. Because I hadn’t had hunger cues in a long time, it was tough to force myself to eat. My parents and siblings were incredibly concerned. Yes, they challenged me on this, but it was a tough line because they firsthand witnessed how my body responded to food. Yet, I was disappearing.
My mom continued to call the GI doctor, but the doctor’s only solution was a temporary NG feeding tube which was a route we didn’t want to take at that point. I lost an unhealthy amount of weight and became severely malnourished. And, the more weight I dropped, the weaker my body became.
Learning and attending school is one of my favorite things to do. For this reason, returning to Bishop England High School in the fall was really exciting. In fact, it was one of my main goals throughout my recovery from surgery. My mom purchased a large whiteboard and one day we went through my top 10 goals. Attending school was #1, before even learning to walk again! Eagerly, I loaded my schedule with five AP classes and two additional honors classes, as I was determined to make up for all of the school I missed the previous year. After my first day of school, I noticed that my neck was hurting very badly again and I had a migraine stemming from the top of my neck. This terrified me, but I did not want to tell anyone because I didn’t want them to think I was too weak to go to school. Guess I should have.
Merely one week into my junior year, I had to drop out of school. My pain had quickly escalated to the point where my legs were becoming uncoordinated again, and it was hard to walk. Also, my eyes were so aggravated by the fluorescent lights in my school that I could hardly see or read. I usually have laser focus, but the pain distracted me and it was near impossible to concentrate.
Dr. Patel imaged me and diagnosed me with a craniocervical strain due to carrying my backpack and trying to look down at a normal desk to write. At this point, he did not think I was strong enough to return to a traditional school setting. Little did I know that forcing my fused spine to look down was causing strain and damage. Due to my malnourishment, I did not recover from this strain quickly. I was bed-bound for six weeks and unable to do anything. I was heartbroken over the thought of missing another year of school. Millie moved back in with our family, as I needed around the clock help and she wanted to help.
Nausea and sharp stomach pain were only exacerbated with the onset of these additional symptoms. When I ate, it often felt like a blow torch had ignited from the top of my rib cage to my belly button. The weight loss continued in September and I had horrible sharp pains at the top of my stomach. My pediatrician now joined the sentiments of the GI doctor, recommending a feeding tube for malnutrition. I did not like this plan at all!
One day before the feeding tube was scheduled to be inserted, my parents found me in a ball in my bed screaming and writhing in stomach pain. They tried everything they could to help; medications, ice, heating pads, music, prayer, etc. Nothing worked. They packed a bag and took me to the MUSC Children’s Hospital emergency room. My vitals were extremely poor and the ER team admitted me pretty quickly. My heart rate had dropped to the 30s and my blood pressure was alarmingly low. One of the physicians told my parents that I would likely be in the hospital for a while. After ruling out appendix, gallbladder, and pancreas issues, we proceeded with a CT scan that showed that I had Superior Mesenteric Artery Syndrome (SMAS).
Basically, when one loses rapid weight the natural fat that exists inside the abdomen shrinks and causes the angle of the superior mesenteric artery to change, putting pressure on the duodenum/small intestine. This leads to an obstruction, and the stomach becomes distended, full of old food. When someone who has this condition eats food, they have significant pain. It’s a terrible condition because patients are starving and nauseous at the same time, and when they eat it hurts. In the past or when undiagnosed, patients would often die because they would simply stop eating from the pain. People would label them as anorexic, but that was an output of a much larger GI issue.
The blockage in my digestive tract explained my severe pain and constant fullness. My medical team felt that my stomach should be decompressed prior to inserting the feeding tube to take the pressure off my intestines and to remove the contents/sludge in my stomach. They called it nasogastric decompression. They inserted a tube up my nose that ran down my throat and into my stomach. Essentially, it was like a vacuum that slowly sucked out the contents. It was disgusting to see the contents go through the clear tube from my stomach out of my nose into a clear bag. Although I hadn’t eaten anything in many days, my stomach was full of gross reddish-brown liquid. This ran for 24 hours. It was tough to not look at the bag every once in a while and watch it slowly fill.
In addition to the grossness of all this, there was an incredible discomfort of having a tube up my nose and down my throat. It was painful to swallow and I was unable to talk. At times I would become anxious because it was constricting my airways and it made it difficult to breathe. If I focused on it, it felt like I was beginning to drown. Several times, it came loose and the staff had it reinserted, which was terrible.
For the first two days, they gave me nutrition through PPN, temporary IV nutrition, as they drained my stomach. In addition to the agonizing GI issues, I was still struggling with symptoms such as vertigo, blurry vision, ear ringing, migraines, and neck pain due to the craniocervical strain in August. I constantly had ice on my head and a heating pad on my stomach. Fortunately, I do not remember much of the first week of this hospital stay. My parents and Millie said it was horrid and traumatic; they seemed a bit scarred from it.
Once my stomach was completely drained, my doctors placed a nasojejunal (NJ) tube. This tube went up my nose and bypassed my stomach and blockage, emptying into my small intestines. For the first few days after this tube was placed, I couldn’t talk because the tube used was an adult tube rather than a pediatric tube (were running low on materials), and soreness from the tube rubbing in my throat. Having a tube take up half your throat is psychologically tough for many reasons. Keeping myself from panicking/feeling like I was choking or couldn’t breathe was tricky. Also, it made communication incredibly difficult. Talking was impossible for the first few days; I couldn’t even type to communicate because of my poor vision. Not being able to communicate was unnerving. Also, the tube increased my migraines due to the additional pressure in my sinuses and eyes. Doctors continued to prescribe me anxiety medication and tranquilizers, but I wasn’t anxious, I was in pain. These were some of the worst and most traumatic days of my life. I often have frightening flashbacks to this scarring hospital stay.
The plan to resolve my SMAS was to increase nutrition through the NJ tube and hope that incremental weight restoration would restore the fat pad in my duodenum. This would supposedly resolve the blockage and hopefully fix the issue. Restoring 5% of my weight resolved the obstruction but many diagnosed with this condition are not this lucky. Believe it or not, SMAS has a mortality rate of 33% and most people are not properly diagnosed. I was incredibly lucky to have a medical team equipped to diagnose and treat my SMAS.
I stayed in the MUSC Children’s Hospital for two weeks. It took many days to tolerate the proper feeding rate, and I went into Refeeding Syndrome which occurs when feeding happens too quickly after a long period of malnourishment. Fast shifts in electrolytes can cause serious complications. Telemetry wires were placed on my chest to monitor my heart rhythm for many days due to my dangerously low heart rate. My doctors anticipated I would need the NJ tube for at least one month.
My friends made posters and cards for my parents to hang in my hospital room, and beautiful flowers populated my room. I saw many GI doctors and other specialists and was blessed to have encouraging and empathetic nurses. The nurses would sit in my room for hours distracting me from my pain and braiding my hair. All this support and love made me feel human during this incredibly dehumanizing hospital stay.