Tuesday, 28 January 2014

Please Don't Call Me Mum!

We spent the first 80% of the first four years of my son, William's, life in hospital. The rest of it was spent juggling complex medical treatment, including intravenous drugs and intravenous feed (TPN) - a treatment only the very highest qualified nurses perform in hospitals. 

A world often condensed into one room 

After William's transplant in 2008, which you can read all about here  (scroll down to November 2008),     we have only had two (now in the middle of our third) long spell in hospital.

When your life is compressed within the walls of a hospital, it can be a huge fight to maintain your own sense of identity. Of course, the child is at the centre of your world, and the focus of the team looking after them and that's just the way it should be and the way you'd want it to be. The juggle between the needs of your child in hospital and any siblings is an impossible one to manage, leaving you feeling constantly guilty - about leaving the well siblings when you're at the hospital and leaving the poorly one when home. I'll be coming back to this in later posts.  What is less talked about is the juggle between your own needs as an individual. I have a book that talks of parenting a sick or disabled child as 'extreme parenting,' making us 'extreme mums.' People often refer to mums in this situation as 'super mums.' We play the role of mum, nurse, physiotherapist, occupational therapist, dietician, pharmacist and more for our children but, amongst all of that, we are us, individuals who have our own set of dreams and ambitions, often forced on hold or given up on with the diagnosis. In the past, I have let that happen time and time again but, this time, faced with the start of what looks set to be a year that takes us back to a life close to the one we knew before William's transplant, I am determined not to let that happen again. My dreams and ambitions for 2014 will have to be adapted sure, but, this time, I won't give up.

Living in a hospital is life in a vacuum. Small things that would normally just irritate you can become massive issues. One of my biggest pet hates is being called 'mum.' In past years I think I just found it a bit patronising and weird but, looking at it again it is so much more. By calling women who are living in hospital with their children, and the men for that matter, 'mum' or 'dad' staff are reducing them as an extension of the child. Someone who is there to play a role, just as the staff are, within the care of the child and running of the ward. I have lived for eight months at a time, sleeping virtually every night and being there every day with nurses who still called me mum. After time it can make us think of ourselves as just mum and forget the 'me' who has needs of their own. Since talking about this with other women many have agreed, even thanked me for voicing what it was that they were struggling to put into worlds themselves about the same. Everyone I've talked to about it said they hate being called mum too. Sure, it's necessary when someone who doesn't know your name needs to address you but, over time, just as they learn the child's name they could learn yours. No one calls the child 'patient!' I must say, most of the team we are living amongst in the liver unit at Birmingham Children's Hospital take great care in learning about the whole family. Their reward is that they can share in the rich tapestry of their patient's lives and take interest in the personalities, talents and goals their parents and siblings have too. As a result of this, we are all one big family who celebrate and hurt together as children receive transplants, get better and, at times, have setbacks. It really doesn't take much and it makes a huge difference! William has suggested that the resident carers name is written on the door or bed space along side the child. What a great idea! I think children's wards across the UK should take it on board.

Monday, 27 January 2014

Happy New Year!

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!