The #imnotanurse_but hashtag today caught my attention, brilliant work by WellChild to launch a campaign highlighting the medical care delivered by parents, siblings and families at home.
Now, confession time. I’m not a nurse. But, my god can I fake it. For 5 years my family has all been nurses for Isaac.
If I sit back and reflect on quite how much pharmaceutical knowledge i’ve developed over the years of us having Isaac I could possibly just decide to break bad and become Bryan Cranston. In terms of medical knowledge I reckon I could blag more than most of the actors on Casualty. How have I learnt it….
Well, when Isaac spent the first three months of his life in NICU we were immediately introduced to the world of medical devices. The little guy spent all his time looking like a badly organised shelf in Maplin, such was the array of electrical cabling he was linked to :
It was a sudden immersion for us ; SATs monitors, NG feeds, doing ‘cares’, learning to pronounce ranitidine and domperidone, learning about CPAP, BIPAP, and more. Much more.
Then, at 9 weeks old Isaac had a tracheostomy as an emergency procedure due to having vocal cord palsy (a symptom of what we now know of him having quadriplegic CP). A trachy. A tube. A ‘how-the-f-do-we-look-after-one-of-those’ trachy. A ‘get-ready-for-the-world-of-suction-catheters’ trachy.
As i’ve said elsewhere on here, I remember a nurse telling us that we had to ‘do trachy’ training. Like trachy training was going to be like this :
Thankfully, it wasn’t. Because even though we’re not nurses, we learned it quick because our little guy couldn’t come home until we did.
Picture this. It was about the 20th December 2010. It was snowy. We lived at the bottom of a steep hill. We were housebound. As Arcade Fire sang, it was a case of ‘No Cars Go’. Isaac, along with his twinny Ethan were laying side by side on a floor mat. Isaac, still NG fed, had his tube taped across his cheek.
Ethan flapped his arms about, as is a 3 month old’s want and with ninja precision managed to get his finger behind Isaac’s NG tube and before we could leap into action it was out, on the mat at the side of them.
Time stood still. The outreach nurse was coming next week to teach us about NG tubes, how to use the litmus strips, how to reinsert a tube. It was feed time too.
The ‘just come back to Preston if you need us at all’ from the nurses as we took Isaac home a week earlier was now not just a memory but an impossibility.
So, google made me a nurse. I googled ‘how to put an NG tube in’ and followed the instructions. I’d not got rubber gloves, but I had litmus strips. It was like something off Macgyver
And, I did it. Not that i’m a hero. I’m not a nurse but. I’m a dad. It needed doing. I didn’t follow NICE guidelines but what I realised, even at that 1 week home stage is that a lot of the ‘nurse stuff’ that Lynsey and I have to do isn’t as per guidelines. We do our best.
Suctioning? Yeah, trained with ‘put your gloves on’ put the catheter down once, back up then replace it with another catheter’. Course we do. At 3am on the n’th time that night we grab our gloves, we go through 3 catheters to suction one bit of spluttery saliva and we then wash our hands before going back to bed. Course we do. I’m not a nurse.
We measure out glycopyrronium, trihexaphenadyl, baclofen, gaviscon and omeprazole 4 times a day into enteral syringes. My 10 yr old and Isaac’s twin aren’t nurses but they can grab ‘two sixties, two tens, a five and a one’ (syringes) from a drawer in 10 seconds. They know where ‘noses’ are kept, and can identify from how Isaac’s trachy sounds when he needs suction. We put hyoscine patches on, change Mic_key buttons, put AFO’s on, change trachys and do the plumbing of the syringe line like engineering experts. But we’re not, we’re a family, we’re not nurses.
The thing is, the #imnotanurse_but campaign is brilliant at capturing the ‘you just get on with it’ bit of being a parent of a child with complex needs. It’s not called #imnotanursesoIgiveup. Because you don’t. Not because you can’t (a common misconception that parents like us see an ‘Isaac’ as a burden), but because you don’t want to give up. You learn because the things you’re doing are often the things that bind the little amount of time you may have one on one with your child.
Life goes on. We both have to work full time. Isaac’s brothers have to go to school. Not being a nurse is a brilliant way of filling the in-between times, it would be great if just occasionally people got an insight and i’m glad there’s a campaign to highlight it. Not for sympathy, but a bit of empathy, sometimes.