15th July 2016
Charlie had to have further sections of bowel removed leaving him with approximately 20-25cm of small bowel remaining. His Gastrostomy was converted to a button so we could commence night time feeds. We definitely knew by this point Charlie was going to be TPN Dependent for the rest of his life and one day he may even require a bowel transplant. We had multiple conversations with both his surgical team and Gastroenterology team to get our heads around the fact our little boy would be TPN dependent for the rest of his life however many years that may be.
There are a lot of risks with TPN and this scared the hell out of us. The hospital Team have been amazing and gave us reassurance as to medical science is constantly changing and improving and let’s focus on the now as opposed to what ifs and when.
Life after this operation was about me training in all of his cares for in order to bring him home on TPN and Gastrostomy feeding. Charlie was discharged from hospital on the 19th December 2016 we had attempted multiple discharges however Charlie’s TPN script was difficult to manage and stabilise.
Over the following year Dec 2016-Sep 2017 Charlie had multiple hospital admissions due to forming further strictures, high volume of fluid loss causing Dehydration, Anaemia, Hypercalcaemia, Nephrocalcinosos and a number of cold and flu viruses triggering his high risk of sepsis protocol therefore he had to be admitted until blood cultures were negative.
Charlie’s Surgical team wanted to leave him as long as possible to see if his remaining bowl of 25cm would grow. The plan was to undergo a surgical procedure called Serial Transverse Enteroplasty Procedure (STEP) this is a surgical procedure used primarily in the treatment of short bowel syndrome (SBS) by making cuts in the intestine and creating a zigzag pattern, surgeons lengthen the amount of bowel available to absorb nutrients. September 2017 Charlie’s health could not be pushed any further and the decision was agreed for him to go ahead with the STEP procedure surgery.