But last weekend we experience a systematic failure, one that may have drastic conseqences for Sarah.
Last week Sarah had immunisations. I dont think Ive gone into detail about her needles before, but Sarah seems to have adverse reactions to most immunisations. But the consequences of her contracting the disease themself outweigh the reaction she seems to get.
So due to the reactions she has been on a catchup schedule. Last week she had 3 of the normal shots, plus her second dose of the swine flu vaccination.
She has also been battling a chest infection/Bronchiolitis but she wasnt too bad, so the decision was made to go ahead with the immunisations. That occured last week.
On Friday she seemed better from a chest point of view and we sighed relief that we had escaped a hospital admission.
A few weeks ago we got accepted onto a program called ACE. Its accelerated care through emergency. Basically if your child needs to come into the ED you call a mobile number and talk to one of the nurses, they inform emergency and when you arrive your child has already been traiged and there is a cubicle waiting for you. Your childs medical history is waiting, the medical team is informed and you are only seen by a Snr Dr who has a brief of your childs medical history and presenting problem.
So what infact happened on Saturday was.
I phoned ACE to say I was on my way in with Sarah. I thought that she may still be battling the end of the infection and needed a chest xray. When I phoned I was told that Sarah had been taken off the ACE program after discussions with the Diabetes Team, the Diabetes team had said they could provide the same service as the ACE program.
So I arrived in Emerg.. Sarah had not already been traiged, they didnt know of her impending arrival not her presenting symptoms.
I explain that she is very lethergic and had been asleep since 7pm the night before, it was now 1pm Saturday afternoon. The traige nurse came and picked her up. She briefly opened her eyes, eyes rolled to the back of her head and she closed them again. She was also hypersensitive and was only waking to painful stimulas.
We were told to go to the clerk and then have a seat and wait to be called.
We sat in the waiting room for 1 hour.
We got called through to the cubicle. We were being seen by a Jnr Registrar. We waste the next hour going through her medical history when she says something that sent my mind spinning
"Why do you check her blood sugars"
I hold my composure, thinking surely someone has informed our Medical Team we are in emergency
Dr says Im going to take some bloods and do a chest xray. Sarah is lethargic as Im sure she has a bacterial chest infection. Will check xray and give you some oral Anti's to go home with.
Its now 4pm and Sarah is still asleep, waking only to painful stimuli, hypersensitive and when you pick her up her limbs are rigid. The same as she had been since arriving at the traige desk.
At 5pm the Dr comes back, The nurse expresses concern that this is not a chest infection and the Dr says Ill just check something with the consultant.
The consultant comes and and has Sarah moved to Resus.
He quickly puts an IV in, while explaining that she is in a constant seizure state and administering Midazalam to interupt the seizure.
Now I sit here, my mind still reeling at this systematic failure.
1. Had we not been taken off the program, Sarah would have already been traiged, her medical team informed of our impending arrival, we would have been a Snr Dr immediately who highly likely would have picked up she was having a absent seizure straight away and treated her accordingly.
2. The Diabetes team are just that. They deal with Diabetes. Sarah clearly want going into emergency because of her Diabetes.
3. They didnt even bother to even inform emergency we were coming in. We sat in a waiting room for an hour, I then wasted another hour going through Sarah's history and answering questions like "why do we check her blood sugar"
So its now 2 days later and we are home, but Im utterly disappointed in how the health system totally failed my child. How one Dr who is no longer on her medical team managed to have her taken off a program critical to her care.
My mind is still reeling at how we managed to sit in the emergency department of one of the worlds leading childrens hospital for 6 hours before someone went to get more experienced help.
And the sad thing is, everyone would have gone home that day without another thought.
Sarah and our family dont have that luxury.