"Living remotely with a child with disability"

My child was born last year suffering a brain injury at birth. They were diagnosed with Severe Cerebral Palsy amongst other diagnoses. 

My child is 100% GJ freka tube fed and 100% relies on a feeding pump due to volume and rate intolerances. 

Last week, the kangaroo pump stopped working and my dietician from Karratha was unable to get their spare one to me for another two days. 

Tom Price hospital called and said they had one from 'the archives' they found that I could borrow, it's a little old school but it will do the job. I felt so relieved until I went home with this very, very old school pump, only to find that the feeding bag disconnects as soon as the set is loaded which spilt milk all over the floor. I got it to stay in place briefly and started the pump and after every 1-2mls it kept alarming with an error. It seemed there was no reason for the error, I checked all things.

I felt very failed by the health system that there has been no upgrade of kangaroo feeding pump, especially as my child is so young and always been tube fed and is known to the hospital because of their complex care. 

We didn't expect to have a child with a disability but we do and we are planning on staying in Tom Price for years but it's things like this that have made us feel so isolated and stressed out in a case of emergency. Not just for my child but for anyone who may find themselves in our position down the track.

I feel the hospitals need some upgraded equipment for the 'just in case' times. That is what I believe hospitals are for after all, yes we are in a remote location but that doesn't mean that anything couldn't happen where actions need to be responded to quickly. In my opinion, every hospital should be properly equipped for that.