THIS HAPPENED is an ongoing series where readers share firsthand experiences living with an ostomy.
Our daughter, Faith, has had an ileostomy since she was two months old because of Hirschsprung’s disease. There's nothing scarier than placing your newborn baby in someone else's hands to undergo an operation — all you can do is pray that everything turns out fine. One lesson I had to learn very early in our journey with Faith's diagnosis was that I must advocate for my child. As her parent, I am her voice. That is such an enormous responsibility, especially when talking to doctors, specialists, and other medical staff who have more expertise about her condition than me. However, I know my child best.
A few hours into surgery we got a call from the nurse. The disease was more extensive than expected. Apparently, cells were missing throughout her entire colon and part of her small intestine. The surgeon decided not to give her an ostomy, instead, he performed a biopsy to locate the transition zone (a section where the good intestine meets the bad). Even though things didn't go as planned, Faith did fine. We were advised of the normal post-surgery precautions, and that she may run a fever for up to 48 hours. Faith seemed fine for the most part besides being a bit grumpy, but that was to be expected. Her surgery was on a Wednesday morning and on Friday afternoon she started running a fever. The nurse gave her Motrin, yet it wouldn’t go away. I was concerned and felt it was time to speak up for my baby. It still makes me angry when I think about what happened next.
As I said, Faith developed a fever and was given Motrin. I mentioned to the nurse that it had been over 48 hours since her surgery and that she shouldn't be running a fever. She agreed and contacted the on-call doctor that night but he didn't come to check on Faith. The nurse took her temperature again and she still had a fever, so the doctor was called a second time and again he did not come to see us. Instead, he told the nurse that he would order blood work in the morning. In addition to a fever, Faith was lethargic. Not overly, but just enough for me to notice that she wasn’t herself. When the nurse came in for the third time, Faith continued to run a fever. So by this time I am angry. I politely told her that the doctor had as long as it took me to put on my shoes and unplug her from the monitors to get in our room — if not, I was taking Faith downstairs to the ER to be seen.
The nurse (who was wonderful) calmly asked me not to do that. If I felt it was necessary, she said I could dial 1111 from the room phone which would call the emergency response team. I got up immediately and called that number. When someone answered I told them our room number and advised them of Faith's condition. The team was there within minutes. Then, at last, the on-call doctor showed up. The doctor in charge of the response team ordered an X-ray to see what was going on. After the response team left, the on-call doc came back into the room. I honestly cannot recall everything that transpired but I do remember being irate at him about blowing us off, and I definitely remember him raising his voice at me. Up to now, it was me that turned into Momma bear. My husband kept his cool, but now it was his turn to speak up and asked the doctor to apologize to me. The doctor had the nerve to say he raised his voice at me because I was yelling. Really?! I reminded him that this was MY daughter and that I'm a concerned, scared parent.
Faith's X-ray showed that her bowel had perforated. The doctor scheduled her for an emergency surgery first thing in the morning. Her original surgeon was out of town, so now she was having an operation with a surgeon we met with only briefly before the procedure. We were a nervous wreck. After what seemed like a lifetime in the waiting room, the surgeon finally came in and told us she did great. We were beyond relieved.
That experience with the attending doctor was horrific. Word on the floor spread like wildfire among the nurses about what happened, and many of them came by to check on us to see how we were doing. They offered apologies and also let us know we had their support. We had some of the best nurses ever during our stay at Vanderbilt. I seriously thought of filing a formal complaint about the situation until the hospital administrator paid us a visit. My husband and I expressed our concerns and praised the nursing staff for all they had done to help us. I really wanted the doctor to be reprimanded for his lackadaisical attitude, but I truly believe he will never forget that night. At the end of the day, the most important person was Faith and her well-being. She was recovering well and that's all that mattered.
About a year later, Faith was back in the hospital for a week with Rotavirus. When we got to her room the nurse started going over everything; where things were located, the food menu, how the TV worked, etc. Then she mentioned that parents have the right to call 1111 if they ever felt like their child was in an emergency situation. Signs were posted around the room with the number and it was listed in the manual on the nightstand. I mentioned to her that we were *very* familiar, but I that didn’t remember the posters being in the room. She told us the posters were fairly new. Later on, I found out that we were the first family at Vanderbilt to ever call the emergency response team. I don’t know for certain that it was our particular incident caused the protocol to change, but I'd like to think that it did.
Good things can come from the storms in our lives, and maybe part of the reason we went through this storm was for those signs to be posted? My hope is that one less parent will feel neglected.
This post appeared on Raising Our Faith.