Dream as if it is and it will be
Wednesday, August 29th, I was scheduled for an hour long surgery to close my GJ gastrocutaneous fistula, and irrigate my colon. The surgery ended up being two and a half hours, but was an overall success. It was going to be a quick recovery. I was expected to go home the following morning, but things took a turn medically as that evening my belly became hard and distended again. The pain was intolerable as the countless layers of internal sutures were stretching. I was diagnosed with a severe post-operative ileus. It lasted almost six painful days. This Monday morning I woke up hoping to get news of discharge. However, Monday morning ended up leaving me with more mental and physical battle wounds.
Upon examining me early in the morning, my surgical team noticed a rapid change in infection and drainage of my incision. They quickly went to get the attending surgeon. After explaining my urgent need to go back to the OR (operating room) with anesthesia, they then explained they couldn’t do that as the severity of my ileus from my previous surgery proposed to many risks. Before I realized what was about to happen the attending surgeon was apologizing and opening my incision up, as I was wide awake in my bed. As the pain shredded me I cocooned myself in my own head; shutting down and not saying a word or moving. I remember looking down and seeing a hole opened in my abdomen as they cleansed this new wound and packed it with gauze. I normally remain stoic, but I then told them: I had to go home. I needed to be discharged that day. My sisters start school this week, I start school this week, and my mind needed to be home. And we would be back in one week for IVIg.
As I sat recovering from such an invasive and unexpected procedure, I felt defeated. The fistula they worked so hard to close with tight incisions had been re-opened when I was wide awake, leaving me with a hole in my belly. Again. Yet, it had to be done, it was the only way to begin removing the pockets of infection.
I used what my mom taught me, and advocated to go home. Soon I was in the car with my dad heading home. A script of antibiotics waiting for me at home, a new journey of packing and cleaning my open incision nightly. I came home weary and fried. But today I felt like I was winning again. I was smiling and feeling joy. Like I was still making progress. All because of school. I started my online classes and classes at school today. Walking in those doors and knowing it would be education and supportive teachers was therapeutic. No procedures, cuts, or prodding. Just learning and growing as an individual. Being able to be home is everything I needed. Yes there’s so much pain with my incision wound, it hurts to move or stand straight, dressing changes bring many tears, and there is a long way to go for there to be healing. But none of that matters because today was a victory. Today reminded me, we are what we dream and envision of being.
Thankful for a devoted medical team that took quick action, and still supported my dreams. This dream is helping me get through this.
Dreaming of more victories,