Monday, 26 May 2014

Why Cameron is No Ordinary Kid - Part 55

Therapy started in earnest as soon as we had been discharged from the hospital. We had appointments every day for therapies and with doctors. Only a few months earlier Cameron and I had been going to Mother's Group and Ceramics and living a full life. Now there was hardly a free moment between appointments and this continued for years.

We started with Physiotherapy, Occupational Therapy, Speech Therapy and Hydrotherapy as outpatients at the hospital. We had different therapists to the ones we had as inpatients so it was a whole new beginning as we got to know everyone. Then there were also all the specialists - Paediatrician, ENT, Audiology, Podiatry, Orthotics, Dietitian, Psychology and Opthamology. Plus there were EEG's, MRI's, blood tests and AFO mouldings. And finally there were equipment fittings and adjustments, hires and returns, pharmacy, team meetings, parking passes to be approved and bills to be paid.

Each day was timetabled meticulously so appointments didn't clash and in all those years I didn't miss or cancel a single appointment - even when we were hospitalized I contacted the department and we caught up on the ward or took Cameron to the offices with his hospital record file retrieved from the end of the bed and returned when we settled back in on the ward.

I think I can honestly say I was never early for an appointment but moving around the hospital I was usually on time. However the first appointment of the day was always a rush to arrive on time once I had dragged myself out of bed, sorted ourselves out, survived the freeway traffic and succeeded in finding a parking place at the hospital. There was many a time I arrived late for an appointment cursing the lack of parking as I checked in.

Some appointments were quite difficult such as Audiology and Opthamology. Cameron didn't respond to the testing techniques they had so it was difficult to get a true picture of his capabilities. Brain damage does tend to complicate things.

Between appointments I would go to Pathology for blood tests, Pharmacy to collect prescriptions, Payments to pay bills and if Cameron was calm the cafeteria to eat, feed Cameron and drink a coffee to keep me going. On bad days when Cameron just wasn't coping and crying I would walk out of the appointment, drive home for half an hour, let Cameron relax and then drive back for the next appointment. I did that four times in one day once.

Going to the Pharmacy for prescriptions seems like something that should only take five to ten minutes but I don't think I ever spent only ten minutes in Pharmacy. Half an hour was quick and on average I'd wait one to one and a half hours. Sometimes two to three hours.

I think it would be scary to know how many hours I have sat waiting for appointments. The longest was 8 hours for an Epileptologist appointment. The longest appointment lasted all day in Audiology. There were many days where I would walk out of one appointment and into another and had to take Cameron's hospital records file with me because the hospital didn't have enough time to transfer them between departments themselves.

The hospital  became our home away from home even though Cameron was now an outpatient. We made friends with clerks and therapists. We chatted to other parents and got to know other patients. I repeated our story endlessly as staff changed and I complained constantly about having to do so - why can't they have a cover sheet on your file with an abbreviated case history? It was a constant and relentless roundabout but we were on a mission to fix Cameron's brain and give him as normal a life as possible and nothing was going to stop me.

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