BiographyWilliam was born prematurely and went home with chronic lung disease requiring oxygen 24 hours a day. His condition worsened rather than showing signs of improvement and he was diagnosed with 'presumed Cystic Fibrosis'. He underwent vigarous treatment for this, including frequent hospital stays for IV antibiotics and an operation to insert a port-a-cath. His health was deteriorating more rapidly than expected for a child with CF.
He had his first birthday in hospital and was back just a few weeks later. During this admission he had sleep studies using a bronchoscopy, PH probe, and was scanned while swallowing (video flouroscopy). These revealed that he had a very severe reflux and problems swallowing, so a tube was inserted through his nose, through his stomach and straight into his intestines. We waited in hospital for an emergency Nissen Fundoplication, a procedure to prevent stomach contents from escaping up into the gullet and lungs, and a gastrostomy so William could be fed straight into his stomach until he was old enough to learn to co-ordiante his swallow. We were expecting to be home within a few weeks of surgery but things did not progress well. It became clear that William's main problems were to do with his stomach and intestines rather than his lungs. He was in intestinal failure. Nothing was moving along or being absorbed so it was flowing back into his stomach and refluxing into his lungs, causing damage and frequent infections.
After three months int The Brompton, William was transferred down the road the Chelsea and Westminster Hospital, where they have a specialist gastroenterology team. He still has intestinal failure and is unable to tolerate any feed or drink. Instead, he is fed by an intravenous feed called TPN (total parenteral nutrition) given direct into his blood strea, through a Hickman Line in his chest. He is on a drip 20 hours a day.
William continues to have frequent hospital stays due to sudden and life threatening infections in his line. He has had further surgery to create an illeostomy so the fluid that accumulates in his intestines can drain out through his stomach into a bag. His future is very uncertain and his condition is considered to be life limiting. We are currently waiting to go to Birmingham Children's Hospital so William can be assessed for a small bowel transplant.
William needs alot of care at home. We have appointments most weeks and William can be admitted to hospital in a life threatening condition very suddenly. Hospital stays often stretch from days to months.
William also has Physical disabilities caused by Cerebral Palsy.
Written by William's mum Sarah
|
