We (royal use of ‘we’, I mean you because i’m already doing my bit) need to make a noise about Wellchild’s Parent led campaign #notanurse_but.
I won’t give a stack of ‘this is why’ reasons. However, I’ll tell you about my families week this week in terms of providing medical care to Isaac. For anyone who hasn’t endured read my blog before, Isaac is my 5 yr old superhero son who has quadriplegic cerebral palsy, a tracheostomy and a gastrostomy.
So far this week since Sunday we (another royal use, but it’s me, Lynsey my wife and his absolutely brill key worker at school) have
- Made up 14 neocate elemental feeds. 14 times measuring 350ml of water, putting Neocate powder in, adding fibre powder and shaking. And shaking. And shaking a bit more. Honestly, if Tom Cruise had seen how I can shake a protein shake shaker at 6.15 in the morning he would have played his role in Cocktail totally differently.
- Measured 1ml of glycopyrronium bromide into a 1ml syringe 14 times
- Measured 2.5ml of gaviscon into a 5ml syringe 5ml syringe 14 times
- Measured 6ml of trihexyphenidyl into a 10ml syringe 11 times.
- Measured 7.5ml of baclofen into a 10ml syringe 11 times.
- Drawn up 60ml of water into a 60ml syringe 30 times
- Suctioned Isaac’s trachy in the region of about 30 times
- Changed the water in the internal balloon part of Isaac’s Mic-Key button once cos it was leaking (plumbers warranty has expired)
- Changed Isaac’s tracheostomy tube once.
- Changed Isaac about 25 times
- Ordered more baclofen from GP.
- Submitted an order for syringes, bottle stoppers and syringe caps to community medical equipment coordinator.
- Taken Isaac to Alder Hey for a sleep deprived EEG (he had to lose 8 hours sleep over previous 2 days poor little fella)
- Taken Isaac to Chorley Hospital for Ophthalmology appointment.
- Taken Isaac to school 4 times (courtesy of ‘gran taxi’, from my fab mother in law who has to get to our house for 7.30 mon-fri as both Lynsey and I have to be out for work).
Also we’ve got Isaac’s twin brother and his ten yr old big brother. Their feeding regime is far less complicated and usually just involves negotiating that chocolate is not an alternative to protein and then just putting something in the oven that they may eat / may spend an hour staring at / may smother in tomato ketchup so it only tastes of ketchup / may try and hide so they can convince us it’s time for dessert.
So, as i’ve said previously, having 3 boys under 11 was always going to make our home something like a mixture of a David Attenborough documentary about marmoset monkeys and the scenes of devastation seen in War of the Worlds (I don’t have a Tom Cruise fixation by the way its just the first film that came to mind, Mr Freud). As parents, we never expected an easy gig. For Isaac’s twin bro and big bro, they were born into this chaos and have had to learn to swim in it, which they do brilliantly. They also know what every syringe size looks like so they can get them for us (just prepping them for summer jobs at Argos as they get older) and big bro can do enteral feeds – he requested to learn.
Why tell you all this, well because #notanurse_but is why. The campaign is about opening the closed doors to the outside world to show what medical care etc families are providing ‘in house’ that they get little support with. There’s thousands of families doing pretty much what we do with their own ‘Isaac’s’ and more. We do it for love (crickey that sounds contrived)….well we do it because we can’t not do it. In the same way when your child toddles through to your bedroom at 3am and says that they’re having a bad dream you maybe don’t put them back in bed and settle them thinking ‘I’m doing this for love’. You maybe think ‘if I do this they’ll shut up and I can go back to bed’. You maybe think ‘well i’m responsible, it’s my role’ or more likely you don’t even think ANYTHING at all, you just do it. You love them, you do what comes with it. It’s just the same with Isaac.
When Isaac was 8 weeks old he had an emergency tracheostomy. The nurses said ‘you’ll need trachy training’ like it was harder than Quantum Mechanics and produced a portfolio for each of us that we had to work through. That was our welcome to the world of being the nurse. I’m not complaining, we just did it. Did it, realised it’s a lot more simple than Quantum Mechanics and carried on doing it. Day in, day out, year in, year out. Just a ‘something that we do’. Similarly, 5 months on from that and it was Mic-Key button training.
What I want for my family is not sympathy. A useless emotion that won’t make an ounce of difference. What we want is empathy ; just an understanding of what goes on. Once there’s that empathy then when I say to a friend ‘i’ve had a terrible morning’ before work then they know what sort of things that may entail for me and my family. In the same way that if they say they’ve had a terrible morning I’ve some understanding of what that may be for them. From that understanding I can try and help, and vice versa.
Isaac is at the middle of a right old tangle of professionals, and I reckon if I did a straw poll then not many would be able to score more than 5 out of 15 on the list I put at the start of this blog as to what we have done this week. That’s why #notanurse_but is needed too – to highlight to the people that SHOULD know that they don’t really know. Not that they don’t care, they just work with resilient families who don’t open the curtains to the amount of things they’re doing. So through the campaign, we may be able to increase that awareness, increase the empathy and insight that professionals have.
I’ve said before in these blogs that campaigns come and go ; some get easily forgotten or just ask for money, or time. #notanurse_but is none of those campaigns. We’re asking parents like me to think about their situation, their needs and what support would help – and to go on the #notanurse_but webpage to perhaps share their story. Everyone else who isn’t in that position, all we’re asking for is a bit of head space…just think about people you know in our position. You don’t need to show up with cakes (well, go on then…), you just need to think about it next time you’re meeting a family like mine so you have some understanding of the ‘behind closed doors’ life of that family and what it means to them, and perhaps how you can ease that pressure through talking about it.#n