The hospital world according to Aaron

My youngest son Aaron (who is 12 and happens to have Down syndrome) had day surgery recently at our children's hospital. In an effort not to be a ‘secret shopper’, I try to take my family centred care hat off when I'm in the hospital with my boy. I focus on him as opposed to critiquing every single interaction. Yes, the experience wasn't perfect – the clerk calling me to confirm Aaron's surgery time didn't mention that the entrance to the day ward had been moved in the midst of renovations (so I got lost); kids waiting for surgery were jammed into a makeshift waiting room; I was called ‘mom’ an awful lot; and one of the nurses said to me, ‘It is so good he's so high functioning’. Overall, the clinical care was exceptional, everybody was respectful towards Aaron, and we were able to go home 5 h after we arrived. That seems like success to me. My youngest son has had four surgeries in his life, and this was the first time I did not push the pre-sedation request. Aaron was relaxed and joking with the nurses, so I thought – let's just see what happens if he doesn't get sedation before he goes into the operating room (OR). I warned him there would be lots of people and bright lights in the OR, and he was perfectly fine (I now wonder if the pre-sedation request was more for me: mom needs sedation). It is fortunate that our hospital has parental presence at induction, which means I was able to go into the OR with him until he was asleep. I teared up a bit when he was put under, as I always do – and the kind anaesthetist said to me: ‘We will take good care of him’. And that they did. Afterwards, I reflected on Aaron's own experience as a patient. He was annoyed that he had to wear a dress (Fig. 1). Apparently, the hospital switched to gowns for kids and don't use pyjamas any more. He had to wear a mask because he had a cough. Sensory-wise, that was not great – it was scratchy and bothered him and he kept taking it off. Despite the fact we explained the going to sleep thing, the first thing he shouted when he woke up after surgery was: ‘I AM NOT DEAD!’ I'm horrified he thought he might have died – I am constantly in awe of how this kid's mind works. I harkened back to earlier in the year when we had to put our beloved chocolate lab ‘to sleep’ and realised I needed to adjust my own explanations and avoid euphemisms. In Aaron's mind, the dog died after he was put to sleep, so why shouldn't he? Oy. Point well taken. The day surgery unit was busy and unfortunately, some of the kids didn't wake up well after surgery, and there was a fair bit of crying and screaming. There was also a considerable amount of construction noise – hammering and drilling. ‘I don't like hospitals’, Aaron told me. I asked why. ‘I don't like these screaming kids. It is too noisy here’, he said. I realised that a less open physical space would have worked better for him, a boy with auditory sensory issues. He wouldn't even consider the popsicle the nurses offered him after surgery. He said, ‘The food here is disgusting’, drawing upon his (accurate) memory as a hospital inpatient. ‘I want to go home’, he concluded. Ask him about his own patient experience, and this is what you get – he is a fountain of truth. I'm grateful for his uneventful experience. I'm also thankful for the folks at the hospital who cared for him: the clerk at reception, the practical nurses, the recovery room nurses, the porters, the surgeon, the OR nurses and the anaesthetist. They all had smiles on their faces, spoke to Aaron directly and did their jobs quickly and competently. This story is a gentle reminder that all surgery is a big deal to families and kids, even if it is considered ‘minor’ to the professionals. I feel fortunate that Aaron's experience included such caring health professionals, and that he is now home safe and sound. What is most interesting about this brief time in the hospital is Aaron's perception of it. For a child with Down syndrome and an identified intellectual disability, he communicated well about his own patient experience. It reminded me that none of us should speak up on his behalf, for he is quite capable of speaking up for himself. Sue Robins is a mother of three and a writer and speaker in the world of patient and family centred care. In her paid work life, she is the Family Advisor at the Sunny Hill Health Centre for Children in Vancouver, Canada. She also co-owns a health communication company called Bird Communications.

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