Back in November 2013 Nick, my husband was rushed to hospital with breathlessness and within two days he was critically ill with clots in his lungs. He was rushed from Wrexham (N Wales) to The Royal Brompton Hospital in Chelsea where he stayed for six weeks in ICU. They worked miracles repairing his heart and lungs but they found his intestines/bowels were ' a mess' and total parenteral nutrition (TPN) was started. Nick returned to Wrexham at the beginning of January to ICU and soon transferred to a surgical ward. His condition puzzled many doctors who prodded, scanned, tested and eventually diagnosing Crohn’s disease.
He came home on April 1st, along came the medical fridge, boxes of equipment and the nurses! Within two weeks I had convinced the nurses that I was competent and that we could manage the nightly 2.5 litre TPN ourselves. The consultants wanted to give his intestines/bowels time to repair with the help of steroids along with not eating and only 'comfort sips'. He has now increased to three litres overnight.
Before November Nick had never been ill and adjustment has not come easy, our family life has been turned upside down, our third granddaughter was just four weeks old when he was taken ill. When he eventually came home meals were difficult but he now takes great pleasure cooking for us all although he can't try it. We had great support from family and friends throughout the stays in both hospitals and since coming home. We managed two trips to hotels and are determined to spend some nights away on our yacht this summer. Last summer Nick sailed up to Scotland and back but our challenge this year is to sail around Anglesey.
The TPN has become part of our lives, even our four year old granddaughter leaves a space next to a Lego bed for the TPN when building a model and only last week Mummy had to look after 'Monkey' in case his line needed attention whilst she was at nursery!
My one wish: That the support we have and still do receive from our healthcare team, our homecare provider and PINNT continue. PINNT, especially the Facebook page has reassured us that we are not alone. We have picked up hints from the many messages and will turn to fellow Facebook friends for help when we are allowed to travel abroad for help.
« Return to Home Artificial Nutrition (HANs) Week Page