Ellie I's quilt   (Quilt Coming Soon)

Child Interests

Frozen, minnie mouse, peppa pig, butterflies, unicorns, princesses, fairies

Pink and purple

Biography

Ellie's right sided aortic arch was picked up at the 20week scan. During the early months she was colicky and had reflux but I was always told it was normal and she'll grow out of it, she was gaining weight slowly so they weren't overly concerned. During the weaning stages she would struggle with swallowing and would regurgitate food, reflux was worse,food would get stuck just after she swallowed. When she was 10 months old we started the hospital journeys and was monitored by a respiratory team. She had her 1st barium swallow study done which showed compression of her oesophagus, followed by CT scan which showed the vascular ring. She had her 1st surgery Feb 23, minor vocal cord damage bit appeared to recover quick and life continued. After 6 months the swallowing problems started coming back, SALT plan put in place for starting nursery and started the hospital journey again. Another barium swallow study which showed compression but in a different place, another CT scan which showed a lot of scar tissue had developed and had wrapped around an artery and compressing her oesophagus again. Another surgery in August 2024, this caused vocal cord damage and an unsafe swallow, she had all nutrition and fluids via Ng tube. As she began to recover she was able to start eating little bits but aspirated on all levels of fluids. The next 4 months was a blur of constant hospital visits, chest infections, broncoscopies, sleep studies and numerous ng tubes as she was vomiting them up a lot. Struggled to maintain weight and wasn't tolerating the ng at all. Urgent list for a peg and she got her mic-key button 21st December 2024. Since recovering from that surgery she has started eating again, she still has an unsafe swallow for liquids and her voice has changed, she is quite conscious that she sounds different now and that she has a special button to help her