Since A's first asthma attack we have met some truly exceptional healthcare individuals who have helped us more than they probably know, (we've also met some shockers, but perhaps I'll leave those and their 'helpful' comments for another post when I'm feeling a little less charitable). Instead, here are just a handful of the brilliant ones.
After A was first discharged from hospital I remember feeling really quite isolated in terms of what we do next and who to turn to both for her medically and to some extent for me mentally. Our local GP practice have been superb, but the turning point came when they made an appointment for me and A to see the specialist asthma nurse. She really has been an incredible support, she introduced me to the Personal Asthma Action Plan, suggested new medications for A and has always found the time to ask about us and how we are coping with the stress and strain of being asthma parents. A likes her too, (at least she did until she realized that it was the same nurse who will go on to give her the flu jab and her immunisations), but she seems happy enough when she gets to look through the nurse's stash of stickers to see if there's any that she hasn't had a number of times before.
This last weekend we found ourselves at the out-of-hours service again and met a great doctor. Very sensitive to the fact that as parents we are now experts in A's day-to-day care, he told us that the fact we own a saturation's monitor told him all he needed to know about how serious things have been. All too often our experience in A's care can be treated as secondary to established medical opinion (one A&E doctor suggested that our sats monitor couldn't possibly have shown such a low reading with A looking as perky as she was. He tested it against his - with a roll of the eyes - only to discover that ours was showing a more consistent, accurate reading), a little understanding that we are the front line in a very individual battle goes a long way and sometimes a child can look fairly well, but their parents (and indeed their sats monitor) are very aware that things are on the brink of something pretty serious.
I've had a couple of occasions where I've really needed someone to talk to, both for my own sanity and to discuss potential tweaks or further suggestions on A's medication. My experience this far is that the nurses at Asthma UK are amazing (available Monday to Friday, 9am-5pm on 0800 121 62 44). These calls usually happen at a point in time when I think I'm fine and dealing with things well and then suddenly I'm just not, and I need to speak to someone right then. Each time I've called I've been at my wits end and each time I've come away from the phone I've felt listened to, understood and armed with a sensible and well informed strategy for the next attack. Do pick up the phone to them, they are brilliant.
Finally if I ever see any of the staff on duty in A&E that first night that we rushed A in, or those who looked after her in the HDU, then I really cannot be held responsible for my actions. I literally love them, I think they're amazing, how can they live normal lives, treated like just anyone else in the street when they do such incredible things for people on a daily basis? Wonderful, wonderful people.
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