Patient Story 2
My daughter is 31 years old. She has Downs Syndrome and was born with a VSD hole in the heart. All of her life she has been very, very poorly due to her heart.
She has spent months in hospital as a baby and child. I`d sleep by her cot in hospital and then, as she got older, a bed. She was born down South, so she was under a Hospital in London. We moved to Liverpool seven years ago this year, she has been under the care of Dr Perry at Liverpool Heart and Chest Hospital these seven years.
I was very grateful when Dr Perry last year decided to do a Coronary Angiogram; he then wrote to Mr Fabri asking him to consider her for heart surgery. That was never ever offered to her down South. So we waited to hear; seemed like a life time waiting to hear from Mr Fabri. Finally, we did hear in November 2008, her operation was to go ahead in January 2009.
So we came to the Heart and Chest Hospital in January 2009. I asked if I could sleep on camp bed by her. Somebody kindly provided a brand new camp bed from hospital.
From the moment of coming into hospital we were put at ease, reassured and offered lots of kindness. Both I and my daughter would like to express our gratitude to all at the Heart and Chest Hospital. We cannot thank all staff concerned from Dr Perry, fabulous Mr Fabri and lovely Dot; pre op nurse with Mr Fabri “our friend” as my daughter calls him.
All nurses say `hello` my name’s whatever, which makes a difference. Nikki was wonderful to me as a mum, a carer. I was very upset; it felt like there was loads of trauma. My daughter stayed in Intensive Care 5 days, which was not expected. Nikki brought me calm and safety. She is a lovely lady. I drove them stir crazy I’m sure. I am alone, its just my daughter and I. It is so very lonely and isolating for me as a mum. Nikki helped me, I’ll never forget her.
When can I say about the ward staff? How marvellous are they? Honestly!! When my daughter was moved from Intensive care to the Ward, it was absolutely fabulous, so professional, caring and kind. It felt like one big happy home. Home from home literally. When on the Ward, my daughter said “I love it here”, that says it all doesn’t it really. Having major heart surgery, trauma to her body – pain from the scar and she says “I love it here”. That’s because she felt safe, happy, and in professional hands. There is also a lovely atmosphere on the Ward.
By the way, the food also is lovely. We were very impressed. My daughter, believe me is very, very fussy eater. I have job at home regarding food. She ate everything on the Ward. I couldn’t believe it. She loved the food. She’d say after the meal, that it was delicious or that was lovely. All the cleaning ladies in Intensive care and on the Ward were lovely and kind. Also lady’s on the Ward sorting out all the meals and bringing them.
We really cannot thank all concerned enough. From the bottom of our hearts, we’ll never forget. We have told lots of people of our experience at Liverpool Heart and Chest Hospital. The girls at PALS are lovely, so caring and supportive. Lisa cried with me when my daughter was in theatre, very traumatic, then we hugged when she came out and everything was ok. All girls in PALS offered box tissues and cups of coffee. These are people I will never forget.