There's been a lot of bad press about nurses and nursing lately. It seems many people have tales to tell of inconsideration, neglect, rudeness, ignorance, and so on. I've not been backwards in coming forwards to talk about mistakes which have been made, but I thought maybe it was time to talk about some of the outstandingly good experiences we've had too.
I'm thinking about the first school nurse we had. Incredible to me now that I was willing to allow Miss Mog to start school aged just two. Still crying much of the time, still unable to tolerate being in her wheelchair for more than a few minutes, seizures, bottle feeding and seizures and refluxy vomiting.
Sue came out to to meet us at home before Mog started school. Together, we worked out a routine which we thought might work for us. A timetable for a child who wouldn't be timetabled, a nursing care plan for a child who at the time had no effective communication other than screaming or throwing up. And somehow, she gave me the confidence I needed to send Mog in.
True, we'd been joining in with swimming lessons, and physio groups, and so it wasn't a totally strange environment. But we were so entangled, Mog and I; she came where I went, and I stayed where she went. So to leave her in school, even if just for a couple of hours at a time, was a very big thing. And Sue made it seem as if it would all be OK.
Was it Sue or the next school nurse who got to deal with tube city, when Mog and one of her nursery friends decided both at the same time that drinking was for wimps, and turned up at school within a week or so of each other with nasogastric tubes? Mog kept hers clipped into her hair ribbons, her friend wore his clipped to his glasses. And the school nurse (and nursery class staff) kept each other sane. Our current school nurse has continued the tradition. We like to keep her on her toes; Mog tends to add new medical complications or treatments over the school holidays, and ideally she times these in order to force our school nurse to redo all the training she's just spend the first day of term sorting.
We met our current community children's nurse shortly after Mog's NG tube had been swapped for a PEG. I think it's reasonable to say that all of us had difficulty in adjusting to Mog's fundoplication - this surgery removed her ability to vomit which was excellent, but also took away her ability to burp. We're used to that now; burping through a tube takes seconds. But Mog confused the medics for a while. When Mog needs to burp, she starts coughing and pouring saliva. Now the natural thing to do when you see a child apparently drowning is to sit them up straight. Unfortunately, to burp Mog most effectively, she needs to lie down flat.
Our CCN at the time was handing over to our new CCN, and introducing her to our family. Miss Mog was propped at one end of the settee, and we had just had a conversation about her burpring problems. I could see the new CCN's eyes taking on a certain "yes dear" expression as I attempted to explain the bits which made no sense to anyone other than Mog. And then Mog started choking, and gave us a proper demonstration. We showed what happens if you do the things we were supposed to be trying (i.e. not a lot, except she gets worse). And then I flipped her on her back, popped a syringe on the end of the PEG, and stood well back. It was a particularly impressive burp; the splashmarks are still on the wall eight years later. And that's why the book cases are where they are.
And to her lasting credit, our new CCN took on what we were saying instantly, and has been one of our strongest advocates ever since. Equipment supplies? She's our woman. Sounding board for new complications? She's our woman. Trying to unpick what might be going on, working out who to contact and in what order? That'll be our CCN. Visiting in hospital, sorting out discharges as soon as possible, training myself and others on whatever new thing we need to be doing, going into tLP's school to make them fully aware of all her needs? That's her.
I know I can leave a message and she'll get back to me as soon as possible. I know that she might not have all the answers, but that she will know where to go to get them. I know that she knows what's possible as well as what's ideal, and I know that she can keep me grounded in reality when necessary!
She has taken on a lead role in our multidisciplinary meetings, and I love that she does not confine herself to what others may think of as the nursing role. She understands as well as we do that the girls' complex health needs permeate the whole of their lives, and so she is there too, when necessary. tLP started at Brownies, and I was able to leave her straight away, because one of the Brownie Guiders had already been trained up by M.
She does her best to simplify our complicated lives; for example checking up on test results and then arranging for our GP to prescribe the necessary antibiotics, cutting out as many steps as possible in the dance we otherwise take from believing something is wrong to having the means to treat it.
And then there's K, the Nurse Consultant at Helen House. K has brought hospice care out of Helen House and into our own homes. When Mog was poorly, and I couldn't get her off CPAP one morning, it was was K who was on the phone and able to do a home visit. K with her stethoscope has visited regularly during illnesses, listening to chests and listening to me, spending the time I need to sort out what's going on and what I need.
K has come with us to extremely challenging hospital appointments, and helped out by asking the questions I would forget to ask, asking her own questions coming from her own greater understanding of the procedures involved, and crucially, remembering the answers for me once we've left. She's visited in hospital when things have been going well, and visited when things haven't been going well.
K and Dr E have together found solutions for Mog which involve keeping her out of hospital. From detailed plans for the future, to provision of home oxygen, to Mog's newest medication - buccal buscopan - she's been able to put her palliative care expertise to work, looking at managing symptoms and improving the quality of both girls' lives. Which always improves my own life too. So many of our doctors are looking at longer term outcomes. K and the Helen House team look at making today better, and that's led to a big increase in Mog's quality of life.
K it was who arranged for tLP to go into Helen House for symptom control at a point when we were waiting for neurosurgery, and K it is who, together with M, arranged for Mog to be kept safe and well during tLP's recent surgeries.
And we mustn't forget our respite nurses who give me three hours' sanity time in the middle of the school holidays, when the girls are ill or have had surgery. Our specialist nurses who keep bladders and bowels and other unglamourous bits and pieces functioning. The ward nurses who have managed little kindnesses like sourcing hot drinks in the middle of the night on a ward which bans them, who have known what to say as the doors close on leaving the anaesthetic room, who have remembered siblings and made a fuss of them during visits, and who have prepared themselves for difficult tasks by collaring the play workers.
So let's hear it for our nurses!
And a final sentence typed by the Little Princess herself:
I thingk re ns re good.