In December 2023, my mom learned she has colon cancer. On December 28, 2023 she went into the hospital to have a colon resection to remove the cancerous area. This was done robotically. After the surgery she was groggy but responsive. On day 2 post op my mom started having delirium (hospital psychosis) and began complaining about increasing abdominal pain. She also quit eating because of it. Several days went by and mom continued to complain about pain in her lower abdomen and the delirium was getting worse.
On January 11, 2024 it was discovered that she needed to go back into the OR emergently due to bowel death (according to the radiologist). So, later in the day she went back into surgery and had to be fully opened up to see what was going on. Turns out part of her bowel had twisted and was dying off. She wound up with a NG tube, ileostomy, ventilation, and an open abdomen from her breasts to her pelvic bone. She was now unresponsive. Her kidneys stopped functioning which caused her to gain over 50lbs of fluid on her body. With this, her ileostomy pulled away from the skin opening and as time went on the right side of her stomach turned black. It was bad. She went through being septic, had to start dialysis, and was on high does antibiotics. She was moved from intubated tubes to a tracheotomy (she pulled out her vent tube). With all of this going on, she also couldnt keep her blood pressure stable. Her BP was low so she had to receive medication to bring it up. Of course, with the pain meds she was receiving wasnt helping with her BP either.
My mom remained unresponsive for weeks. Finally, she started opening her eyes but would not follow any verbal commands. She responded to pain stimuli and touch to her feet (she hates her feet messed with). She also mouthed oww several times when the nurse pinched her arm.
January 31, 2024 mom was moved from ICU to a critical care rehab. When she arrived, a surgeon reviewed her chart and saw her abdomen and all the dead tissue. He immediately said she needed to have bedside surgery to remove the tissue that was black. She had that done that night. He removed almost the entire right side of the fascia which now has her ileostomy leaking into her wound. The next day, a doctor called me and said that mom is actively dying and all they can do is keep her comfortable. This was February 1, 2024.
My mom is still hanging in there. She turned 77 years old on February 6, 2024. She opens her eyes and will follow you but still doesnt follow commands. Previously, I was told by neurology that she probably has brain damage from the low blood pressure. Im not convinced since she mouthed oww when pinched. I feel like I'm going through all of the same things that I did directly after her surgeries. I'm frustrated at the doctor as I feel like he hasnt reviewed her chart in its entirety. There's things that was helping her that she isnt getting now such as nausea meds (she's been vomiting every day). She also was more active when she was getting morphine. Right now she's getting fentanyl. I've tried to speak with the doctor but he doesnt call me back. I was even with her on Tuesday when the care team made rounds and the doctor came in, looked mom over, asked me if she was responding to me at all, which I said no because she was extra out of it that day. He turned to the nurse and advised to get a blood gas on her and he left. I was under the impression he was going to come back once the results were in and we'd discuss her care. HE NEVER CAME BACK! I've spoken with my mom's patient advocate and she is going to be in mom's room today when the doctor makes rounds and have him call me right then. Hopefully I can get a clearer understanding as to what the care plan is so I know what to look for, expect, etc.
All of this has been tremendously stressful. I've continued to work throughout all of this and was visiting my mom every single day, sometimes twice. Now that she's in the rehab facility I'm not able to visit daily because it's an hour and a half away from me. I now go every other day after work and on the weekends. I had to ask my own doctor for medication to help with my emotions because I am all over the place all of the time. How do you get through something like this? What's your experience? I am exhausted.
