On April 1st, I was finally able to return home after my surgery. The surgical pain was severe, but my MALS and SMAS symptoms were finally gone. I spent April 1st and 2nd enjoying bites of the food I had missed, visiting with friends, and watching UNC’s March Madness victories with my family.
April 3rd is when things took a turn for the worse. I developed a horrible pain in the left lower quadrant of my abdomen. It was unlike my pre-surgical pain or the pain I had felt from my incision in the first week post-op. This pain worsened severely after eating, and after a few bites of dinner, I ended up in the ER. I was then taken in an ambulance to the children’s hospital and admitted for observation. I spent two nights in the hospital, draining stomach contents out of my feeding tube and taking a break from eating by mouth. I was sent home, feeling slightly better, thinking that this pain was gone for good and was just a small bump in my road to recovery.
However, after just 24 hours back at home, the pain returned, worse than before. This time it came along with an intense stabbing pain in my back. We made the decision to drive back to Winston Salem, where my surgery had been done, to be admitted by the surgery team and have some tests run. When I arrived, I immediately started vomiting massive amounts of bile, and it took multiple medications to get it under control. I was completely pale and weak. I also had a CT run as soon as we got there to eliminate the possibility of anything dangerous, such as internal bleeding from the surgery. The scan revealed that I had an ileus, meaning part of my intestines was not yet working after surgery, causing my pain and causing food to get backed up, leading to vomiting. The dehydration that the ileus caused had also led to some kidney stones, explaining the back pain. I spent several days in the hospital, running IV fluids and receiving pain medicine. The pain faded away as my intestines woke up, and I was sent home once again.
This time, the pain didn’t come back, and once again, I began to eat small bites of food. For about a week, I could eat small amounts of food without any symptoms at all. It was so exciting to feel normal again, besides the surgical incision pain that lingered. Then, out of nowhere, my MALS pain came back. The pain I thought was finally gone forever was back, and just as bad as it had ever been. I was confused, heartbroken, and defeated. And to make things worse, the balloon in my feeding tube popped, and I had to go back to the hospital once again to get it replaced under anesthesia.
I was once again dependent on a feeding tube for nutrition. Well, at least I was for a week. At that point, I started to experience pain with the tube feeds, just as I did with eating and drinking by mouth. I now had no source of nutrition, no answers for my returning symptoms, and no idea what to do.
I spent the rest of the month in various doctors’ appointments, saline infusions for hydration, hospitals for pain control and feeding tube procedures, and tests. But we had no answers and no plan.
Kate's Courage 