Jayda was born premature at twenty eight weeks; she was twelve weeks early and weighed only 2.11lb. She stayed in the Liverpool Women’s Hospital for seventeen weeks after she was born, An initial ultrasound showed a bleed and a cyst in her brain and doctors warned me that she would have some learning difficulties.
Following more ultrasound scans, we were taken into a room and told that Jayda had Cerebral Palsy. We have been in and out of Alder Hey ever since.
Eighteen months ago, Jayda started suffering from really bad chest infections. Each time we were admitted to Alder Hey, we were staying longer. Every time she got a virus it was hitting her harder and taking her longer to recover. As soon as she recovered she was sick again.
This current admission has been our longest. We spent 229 days in the High Dependency Unit (HDU). I honestly thought I was going to lose her. She had a really severe chest infection and was on CPAP (Continuous Positive Airway Pressure) for ages, but it didn’t seem to be doing anything for her. She ended up on BiPAP to help her breath easier. This seemed to give her extra support, but at times 15 litres of oxygen couldn’t even keep her sats up.
At times I found it really hard. I was on my own but the Nurses on HDU became like my family. Emma Twigg (Psychologist) was brilliant, and she was really good at offering support.
In September (2012) there was a big discussion between a few consultants and they said the last thing that they could do for Jayda was insert a tracheostomy. Even if there was only a 1% chance that it would work I wanted to try it. At first it seemed to be working fine. Then Jayda got another chest infection, she was really poorly and ended up back on a vent and IVs. That November was the darkest time. Dr Spinty even came in from home to see us because of how poorly she was.
Dr Spinty started Jayda on an autonomic dysfunction treatment. It seems to have done something really good for her and her condition has really improved. Amazingly Jayda picked up, she’s had a few infections since, but she seems to have got stronger.
We left HDU in January and I can never thank the nurses and all the staff enough for what they did for Jayda. We are now back on the Neuro Unit! We’ve been in and out of Neuro since Jayda was a tiny baby. Everyone knows us here! Everywhere around the hospital people are so caring. Bernie, the Neuro Sister even used to come and visit us when we were in HDU to see how we were doing.
While we’ve been on Neuro we have been awarded with a care package, meaning we can soon go home! Jayda will have care seven nights a week and 35 hours throughout the week days! Hopefully Jayda will be starting nursery when we go home! I never thought that this would happen.
It’s only when I sit down and reflect; I realise what I have been through. Being a single mum, it’s hard and I have to rely on family members. My mum and sister have really been a godsend for me.
Dr Spinty has been amazing. He’s been involved in Jayda’s care since she was three months old. Nothing has ever been too much for him. If I had a million pounds I’d give it to Dr Spinty! I feel like I owe him my life. It’s because of him that Jayda is smiling again.
Donna and all the girls in the canteen have also always been there, a shoulder to cry on. I’d sit down and they’d bring over a cup of tea and they got me through some really dark days. I am so lucky to have Alder Hey on my doorstep, I really am!
Jayda (Princess) Jones (as she’s known here!) is going home smiling and I can’t believe it! Thank You Everyone!
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