"My disabled non verbal sibling's care"

My sibling who is non verbal and has Rett syndrome,  was brought to hospital as they were very unwell. Doctors believe through blood tests and CT Scans that they have an abcess on their lung. My sibling was hospitalised for 1 week. The Doctors stated we could take them home but they are still very sick and they will need special liquid antibiotics and blood tests every week to make sure the bacteria rate continues to drop. 

We took my sibling home and unfortunately, the discharging doctor had not given us any paperwork. We took my sibling's antibiotics script to the pharmacy who told us this paperwork was incorrect and was missing pages. We went back to the hospital and the nurse followed this up and and thankfully we were able to get the much-needed medication as the missing parts to the script were found.

A few days elapse and we remember we need to get my sibling's blood tested in a few days. I rang the hospital as we had no paperwork for this and was instructed to call back the next day as it was a public holiday. The admin lady's were very helpful and let me know our options to find the information we needed. I called pathology who had no records for my sibling. I then called medical records who told me there was nothing in my sibling's notes about blood tests. I was told that the file would be sent to the doctors for follow-up immediately but now my sibling is overdue for the tests and almost 12 hours has elapsed. 

My sibling is still very ill and again they can't talk to tell us what's going on with them so we have to be very observant to their behaviour.  It's not normal for them to sleep all the time . So we have been left with no choice but to bring them to the ED again.  I am really upset that this is the way a hospital seemingly treats the most vulnerable in society.