After 3-4 weeks Amy was weaned off her ventilator and moved onto top flat. Amy hadn’t made much progress at this stage and if anything Amy developed new challenges such as dystonia / involuntary movements. This is something no parent should have to witness their child go through. Leaving ICU was terrifying to me. Amy had 24-hour care and moving to Top Flat would mean that this would no longer be required. I will never forget the fear I felt.

However, I didn’t need to worry for long. As soon as Amy arrived on Top Flat all I can say is that she was surrounded by Guardian Angels except for these angels wore uniforms. One of the first nurses on Top Flat that I interacted with was Michelle. She understood how overwhelming moving from ICU to a ward was for me as Amy’s mother. She sat with me and listened to my fears and provided what reassurance she could.  This approach was something I think that is filtered down through the nursing team as Fionnuala the Clinical Nurse Manager was equally as kind and reassuring. Amy was under the care of a Paediatrician  and Dr. O’Rourke, Neurologist. Both doctors enlisted the help of Dr Louise Baker, Consultant Paediatrician with an interest in Neurodisability.

Their care and dedication to Amy was also evident in all my dealings with them.  It was decided that Amy would need 24-hour care while on Top Flat which was such a relief to me to get. I have to say every member of staff play their part in supporting families. Jackie one of the tea ladies sticks out in my memory. She was always happy and singing. Often singing ‘do you want to build a snowman’. She used to sing to Amy and give her words of encouragement. Amy’s Dad describes her as a tower of happiness. Once Amy became alert she fell in love with Jackie as did all of Amy’s family.

Aoife was Amy’s may carer and the care she provided Amy was incredible. All of the nurses would brush Amy’s hair, talk to her, reassure her and support the family in any way they could. Tina, the hygiene assistant was another great support, she chatted to Amy every day as she did her work. There is no member of staff not willing to go above and beyond to support the child and their family.  It is hard to explain the condition Amy was in at this time. She was no longer deemed to be in a coma but was unable to communicate. To me it seemed that Amy was locked in with no control over the movements of her body and with no means of communication. I cannot describe how difficult it is to watch your child that had been so full of life reduced to the situation she was in. I wouldn’t have got though those dark days without the wonderful support and care of the staff in Top Flat.

Slowly Amy started to shows some glimmer of recovery. Every little improvement no matter how small was celebrated by all the staff. You really felt that they were on the journey with you.  Julie the play therapist was also a crucial person in Amy’s care as was Alison from music therapy. Julie spent a lot of time supporting Amy in a time when things were very difficult. When Amy came out of her coma she was often confused and frightened. While this is a normal process for someone coming out of a coma, it is difficult to watch your 12-year-old daughter going through it. Julie and indeed Alison greatly supported Amy through this time. Julie also nominated Amy for the DIY SOS Big Build. Amy’s application was successful and our home was transformed. This played an enormous part in Amy’s recovery. Amy had a home that was adapted to her needs both physically and emotionally. We are forever in Julie’s debt for putting Amy’s name forward.