Day 4 - Lots of fun and lots of storage room - Ezekiel’s story, by his mum
When Ezekiel first stared feeding as a baby we had no idea how complex his feeding journey would be. Even though he has had multiple admissions and surgeries in the past five years he doesn’t let anything stop him from having fun and being a little boy! Ezekiel is now six-years old. He had a percutaneous endoscopic gastrotomy (PEG) fitted in 2014 and jejunostomy (JEJ) feeding tube in 2017 due to multiple allergy and gut dysmotility.
He loves going to school and playing with his friends, especially his best friend Mikey. He enjoys attending Forest School on a Friday afternoon and being the helping hand to take the register to the office. Ezekiel is always happy and likes everything to be tidy! He is so brave and always tries his best at everything. He likes going swimming, dancing and going to drama group. This year Ezekiel will be in the pantomime.
The team around Ezekiel are excellent and give both Ezekiel and our family a lot of support. He had a brilliant relationship with his complex nurse, Shelly, and trusts her 100 per cent.
When our family started out on this journey, I had no idea how much storage we would need! We have had to have an under-stair cupboard and shed built to store all the medical equipment - Ezekiel’s delivery is 50 boxes each month!
Raising a tube fed child can throw some major changes and challenges in the mix. Juggling childcare, after school activities, birthdays, Christmas, alongside theatre slots is hard work. One important thing is to pick a great school which will support the whole family. Our school is amazing!
Going on holiday is a challenge. We can’t fit all the luggage and medical equipment into the car, so to get to the airport we need to take an eight-seater taxi!
You will lose friends but will gain stronger friends throughout. Your days change, your plans will change, but a real friend just accepts you and your family for who they are. On a positive note JEJ feeding has been a great decision for Ezekiel. It has improved the quality of his life. He is gaining weight and growing on his nutrition and regular contact with his dietitian means this is constantly monitored.
One thing that would make Ezekiel’s (and our) journey easier would be pre-made feed, his is not (it’s hypoallergic feed) so takes more organisation, more storage extra resources etc. A pre-made feed would be much easier.
We are so grateful that we have an amazing NHS who keep our little boy alive. PINNT has been great support to us as a family and Ezekiel loves looking at his magazine and attending the fun days in the summer.