Happy New Year! I'm a little late in wishing you the best possible start to 2014 I know but it may be that you have just discovered me and my world by arriving at this blog post, in which case, I haven't had the chance to wish you this before. If I do know you, other than the per functionary Facebook status around midnight on January 1st, I probably haven't had the chance to wish you this either.
On 31st December, I wrote a Facebook status declaring;
"At midnight today, we will be able to officially celebrate the first year in William's life ever with no emergency hospital admissions. Been a few close shaves but we made it!"
The next day, William woke telling me he had gained weight over Christmas. William is tube fed overnight and, other than 'chip shop chips,' crisps and milk, has very little else, Christmas or not, so I knew that wasn't the case. "I can't even bend over," he explained. I looked up and saw he was right, his tummy was huge and rock hard. He had eaten some chips the night before and it turned out they had blocked his bowel and took all day to work their way through, undigested, into his illeostomy, the end of his small bowel that comes out through the skin on his tummy and into a bag.
Overnight on January 1st William lost two litres of fluid through his stoma. Our protocol is to contact his specialist transplant team if it's over a litre in 24 hours! My celebrations of a year clear of emergencies was clearly not going to last into a new one. By January 3rd, Wills was lying on a trolley in A and E unable to tolerate any food or fluid into his bowel and so dehydrated he was in renal failure. He is now well hydrated, thanks to IV fluids. We are currently residing at Birmingham Children's Hospital with the specialist team that have looked after William since his transplant in 2008. His bowel still isn't working and he's being fed by TPN, a specialist feed comprising every nutritional element he needs, delivered by drip straight into the main blood stream.
On Wednesday, William will get a Hickman Line and I will be in charge of taking care of a line that, if handled wrongly, could introduce an infection or air bubble that could kill him. There is every chance he will go home needing TPN for a while. We have been here before and, with the gift of hindsight, I can look back on the lessons I have learned. There are many medical and clinical lessons, such as limiting the number of people who access the line to limit infection (read, only me and nurses I trust 100% are allowed anywhere near it!) But, more importantly, are the lessons I have learned about myself. It is all too easily to loose yourself, your own identity, spirit and creativity in this sanitised, medical world full of procedures, life and death treatments and worry. I have let this happen to me before and this time round, I am determined not to.
This blog will follow my quest to remain Sarah, a writer and creative individual with her own dreams, hopes, ambitions and needs whilst living in hospitals, living with uncertainty and managing the complicated care of a child, alongside his emotional needs and those of his two older sisters. It won't always be easy to remember I am more that just William's Mum, and to remind other of that fact too. I know but, with some care and a lot of juggling, I know that this is still going to be a Happy New Year!