1st March 2016
Charlie was taken back to theatre for further surgery in the hope that the antibiotics had managed to save parts of his small bowel that was slightly affected by Necrotising Enterocolitis. Unfortunately, the antibiotics had not worked due to Charlie’s low immune system further sections were damaged and had to be removed, leaving him with roughly 85cm of re-joined sections of small bowel. The only positive news we received that day was Charlie had a full healthy colon and for now his ileocecal valve remained intact. His surgeon broke the news to us that Charlie would be returning to the ward with a duodena-jejunal stump bought to the service as stoma and his distal joined up bowel had been bought out as a mucous fistula. He also had an NG tube for gastric decompression as this drained any fluid from his stomach.
From this day forward, we now had to come to terms our perfectly little healthy baby had a stoma and a mucus fistula we needed to care for. I through myself straight in and quickly learnt how to care for them as soon as the Stoma Nurse came to visit Charlie the following day.
As difficult as it was, my thoughts where I am Charlie’s Mother and I wanted to be the one who did all his care exactly how it would be if we were at home.
Every day I would ensure I was by Charlies side at hand over so that I could hear every little bit of detail just in case they were not telling us everything. It’s very easy to become paranode as you are that tired and worried you start to believe that you are not being told everything. I would make sure I would ask questions if they would say anything, I didn’t understand I would ask more or research the net to help me understand. I studied the nurses check sheet they had to fill out throughout their shift so that I knew exactly what his observations were. I studied his ventilator and every little beep or change in retherm. I monitored his pain management, TPN, IV fluids, morning and evening blood gas results, pain management, fluid output from his NG drainage bag, stoma and fistula, Temperature, heart rate, CRP levels (infection markers) TPN Lab results you name it. I bet the doctors and nurses thought I was one crazy mum.
They had to tell me on numerous occasions to let them do their job and it wasn’t for me to worry about all of this. Every day we prayed Charlie's health would improve.