15th September 2017 Charlie's 5th Laparotomy
Charlie’s STEP surgical procedure went as well as it could, looking back we were expecting the worse as each surgery we had been given bad news.
During the surgery they made cuts in the remaining small intestine and creating a zigzag pattern, Charlies surgeons removed 15cm of structured intestine and were able to lengthen the remaining amount of bowel to 45cm, this has increased his chances to absorb some nutrients and reduce his TPN hours in the future.
Charlie was 22 months old when he was allowed to start eating and trying food orally, unfortunately his journey has been a tough one regarding food and we have daily battles with encouraging him to eat.
Since his surgery Charlie has only had two hospital admissions these have been for minor issues like ear infection and the flu virus. The STEP procedure has definitely been for the better for Charlie, he has since started a blended diet and has been gaining weight and developing well. We have not been able to reduce his TPN hours however we have been able to reduce his calorie intake. We have always new Charlie has lost a large section of his small bowel that absorbs fluid therefore if he was to be reduced off TPN he would always need IV Fluid as he cannot absorb water/fluids intestinally.
Life at home has been great, we have definitely had many highs and lows with managing it all and adjusting to life. It all would not have been possible if it wasn’t down the NHS and the dedicated teams we have supporting us along the way.
Charlie also wouldn't be here today without your blood and plasma thank you to all the blood donors. Unfortunately, due to the nature of Charlie's condition his health is very unpredictable and an organ transplant is never truly off the cards. If I could please ask you to consider joining the blood & organ donation register or even discuss this with family as you never know yourself or somebody close to you may one day require one.Thank you for taking the time to read our Journey.
Sending love and well wishes to you all
The Radford Family x