The following is a copy of the letter sent to my mother’s attorney while we attempted to file malpractice against a surgeon in 2012- two years after the course of the events described. Names have been changed for privacy.
Her pains began on memorial day. We rushed her to the local hospital, where the tests were inconclusive. We already knew her system was complicated- her heart surgeries had already been witness to that fact. So when regular doctors could not understand the situation, we knew we would have to go to the experts first. So the tests and the consultations began. Based on several recommendations, we decided to pursue surgery as quickly as possible in case it got worse.
The first surgery would be exploratory, and minimally invasive. There was a feeling that there would be scar tissue build up on the jejunum, but if it was not too acute the problem would be solved. It went fairly quickly, I spent about two hours in the waiting room from pre to post-op. We were told it was a success. The doctor had removed some scar tissue but wasn’t able to remove all of it. So we waited for her to recover. Except she didn’t. At her bedside, I saw the bile being pumped from her stomach coming out black. Nurses and the doctor insisted that she was getting better, forcing solid foods onto her plate after only a few days of clear liquids. Everyone could see her condition was deteriorating. Finally, we convinced the surgeon that her condition was not getting better, and she was still in as much pain as before. So there were more tests and CAT scans.
So it was decided a second surgery was necessary because the intestine was not just blocked by scar tissue, but because the incitiception she had as an infant was returning with aggravating results. So they cut her open to get to the problem. It would be a complicated procedure, but her assured us he was capable. That decision ended up with her losing fourteen inches of intestine. They couldn’t remove the area with the blockage, he drew us a picture. So they had created a bypass to get around that piece of intestine, like a car crash was the analogy used. It sounded reasonable. There was not the period of seeming recovery. I don’t remember if she was ever more lucid than in the post-op recovery room. No one seemed concerned except for the family. Nurses delayed her pain medications, and we were informed the surgeon was going on vacation soon. The ‘solution’ they provided was to apply a local anesthetic, but in order to apply it my mom would have to sit up, which she was unable to do. The following few days were tense. Finally, less than a week later, my aunt and uncle made some phone calls to try to arrange getting my mom to UCSF. My mom was convinced she was going to die at this point.
When my aunt and uncle were on the phone, I distinctly remember the conversation trying to arrange how my mom was going to get from one hospital to another. We needed to get there quickly, but a helicopter was out of the question because the movement could make her go septic. So we decided on an ambulance, traveling in the middle of the night. She had to travel at a stable pace, with as few sudden stops as possible. UCSF, not the original hospital, arranged everything. We had to fight for hours to get it approved in the middle of the night, arguing with insurance. I have no idea how my family even got a hold of anyone.
The next morning my dad and I drove to UCSF. My mom was in such bad condition that she barely recognized us coming in. The doctors told us that they did not want to operate yet because the tissue was too swollen from the last surgery and they wanted to treat it with anti-nausea and pain killers until they could see what it looked like with their scans. This proved exceedingly difficult. The view of the jejunum was blocked by the scar tissue and swelling of the intestines. Finally they, warning us of their hesitation to do so, went into surgery to find the blockage and repair the intestinal tract.
Six hours later the attending surgeon informed us she was recovering but they had to remove several feet of intestinal tract. This lead to the recovery period. Different pain killers, anti-nausea, anti-inflammatories, sometimes trying something new every day. Some she threw up, some she hallucinated on, and others just didn’t quell the pain. She only slept in the daytime when I came to visit. At night the cramping was intense and she fell into a deep depression along with the medication side effects. Blockages would arise whenever we tried to feed her any way but from a nutrient bag. After the first month there we started to discuss the possibility of hospice care while she recovered.
The lead surgeon came in about a week after the procedure to discuss what they had done. He drew a picture of the stomach and intestinal tract, as it would be normally. then he showed where the first blockage was. He explained that while the first surgery had attempted to remove scar tissue, it actually had made it worse. Therefore the second surgery the doctor did not want to remove the blocked area so attempted to create a bypass by connecting it to a different part of the intestine. This would have been fine except intestines move in one direction, not with gravity, and the first surgeon had not taken this into consideration and attached it so the blockage became worse and worse, with more bile building up. That is why they had to remove so much tissue.
After a few long weeks and my twenty-first birthday, the combination of pain killers with anti-nausea medication made my mom lucid enough to begin physical therapy. She could barely walk because all of the muscles in her abdomen has to be cut open and re-opened. The recovery was slow, but we were able to take her home rather than keep her in a hospice. Her diet is pretty much the same since about 6 months after she got home. Liquid is preferable, but no fiber and no fatty foods. Chicken and noodles. Even juice is difficult to handle.
Six years since the initial surgery, my mom has still not fully recovered and probably never will. She used to love to cook, was a complete caretaker, and can no longer take on the world as hotheadedly as she used to. I’ve blocked most of it out- I was the liaison between doctors, family, and friends. She was in a hospital bed for four months. We pursued legal action after the first doctor, but malpractice was denied because of the sole reason my mother had the will to live and family to support her.