"We are so grateful for the effort, time and love that is given to our family"

How do you describe a team of people who care for your son like their own, that treat your family with so much respect and who give us the support and help to look after our son and make having a medically complex child at home possible?

Our son has pushed every single limit possible when it comes to his health over the last 4 years to a different level. He has spent over 3 years out of the last 4 in and out of hospital and an 8-month stay in GOSH. More surgeries than I care to remember and with 4 medical devices in his abdomen, it's safe to say my son takes a lot of care and medical intervention.

At first the thought of taking my son home was so daunting as a mother I'm not afraid to admit it was scary. How was I going to cope? I had got used to having nurses within the ward for over 3 years, how were we as a family going to cope with all my son's needs and be a family, still be parents to our daughter and look after a home and my son's dad hold down a full time job? 

Going home on TPN and Iv Fluids, an ileostomy, peg and pej and a suprapubic catheter all takes a lot of care and hard work.

Thankfully for us, we had a team ready to take us on with open arms.

The CCN team in Armagh are literally the back bone of us having a life at home as close to normal that we could ever of imagined.

Yes it was daunting and it took me a lot of time to finally walk out of the room and go to bed for an hour away from my son and know he would be OK, but we have done it - we go to the parks, we have fun, and we have a life.

I can even admit I now leave our home whilst my son's nurses are with him and have coffee with friends and even get my hair done, and trust me that alone feels like a month on a desert island after all we have been through together.

Michelle (the boss my son calls her lol) listens, she cares, she takes on board and she acts on any amendments we need to my son's care. She has an amazing team and we are so so truly thankful for her being so understanding.

Alison, my son's lead nurse, comes into our home and she brings the fun with her. If my son wants to sing and dance to Snow Patrol in between getting his devices changed, then that's what happens. She cares for my boy like her own and exactly how I want him treated with his mental and medical health always her priority. Care plans and rotas are always right up to date, and trust me with my son this can take a lot of alterations, with changes in medications and appointments etc, with consultants altering things to work with my son's needs.

Suzie has been known to ourselves from when my son was weeks old on the old 3 North, so we love to see her coming to care for my son. We call her the organiser, if there's a medical device or medication needing ordered, be assured there will be a note left or a list compiled of what's getting low. Everyone needs a Suzie, especially when you have a child that needs so many supplies from different sources, the last extra stress we need is running out of essentials for my son's care. That aside, they have great fun together and Suzie writes all the lists of my son's favourite movie characters and singers and helps him find out all about new things and leaning new facts. My son's needs are so much more than medication and dressings. Suzie is an amazing nurse and so caring and compassionate.

Caroline has cared for my son for over 3 years now, both in hospital and at home, and when my son asks what nurse is coming and you tell him Caroline, he knows to get the lego ready because I think she's the only person patient enough for all those tiny little pieces and especially when he tries to hide a few pieces on her. She has the most caring and gentle nature and listens to my son's requests and go with what he can cope with when it comes to changing extension sets and when he needs a wee break from it all.

We honestly are so so so very lucky to have a team like CCN Armagh, that's what they are, a team.

Life at home is only possible because of them, on a bad night with my son and your nurse makes mummy a coffee and tells her to go to bed, she will look after her boy, you know in your heart they mean it and they do it.

My son's very complex and we are so grateful for the effort, time and love that is given to our family and especially my son's sister, cause it's not always easy having people in your house and you're getting ready for school. But the CCN aren't just my son's nurses, they are our support network and the backbone, why we are able to live a life full of fun amongst the madness at home 

Thank you xxxxx