From a Cardiac Nurse
We medical moms know the difference a great nurse can make. Whenever I speak to the Yale pediatric nursing students my first story is about how nurses saved Aidan’s life. I’m pleased to introduce you to my cousin Ruth from Ireland. She’s a cardiac nurse and she is FOR families.
I’ve been a paediatric nurse for over ten years now, of which I’ve spent the majority of them working with children with complex cardiac conditions. Any parent of a heart child will know that when your son or daughter has such a condition it’s not just about the heart. There is so much more to it than that. The feeding, the weight gain, the ng or peg tubes, the sleepless nights, the MRIs, the angiograms, the echos, the holters, the bloods, the appointments, the worry, the heartache. It is all consuming and has been known to tear families apart, geographically and emotionally.
Over the last decade I have learnt so much about both the fragility and wonder of human life and many things have amazed me.
I am in awe of the doctor who can diagnose the specific condition of a cyanosed baby hours old by pointing the echo probe on their tiny delicate chest, watching the blurred images on the screen. I am in awe of the surgeon who can spend 12 hours operating on the tiniest of structures within the smallest heart to somehow get the plumbing back to a way that can maintain the baby till their next surgery. I am in awe of how the body can compensate and protect itself. I am in awe of the 6yr old who bounces back so quickly from their third open heart surgery and gets up out of bed just days after, wheeling their chest drains down to the playroom.
While I have so much admiration for these children-for the babies and younger ones, ignorance is bliss. For the parents carrying the full weight of the diagnosis and the often grim reality, the luxury of ignorance is not afforded to them.
So that is why most of all I am in awe of them, especially since I became a parent myself. Going back to work after my maternity leave was in one way like starting again as a young student nurse, even though I knew the theory I was now exposed to those feelings that only a mother can feel.
I feel for the parents who hand their child over to the theatre staff imagining he was mine. I feel for the mother trying to cajole the 4yr old in to have their bloods taken for the fifth day in a row because their electrolytes are still way off, knowing if that was me I’d be biting my lip trying not to cry. I feel for the mum who has been in the hospital for two weeks with her teenager who has just been told ‘sorry I know you thought you were going home today but we have to keep you a bit longer while we try another med’. She tries to be positive for her son and make out it doesn’t matter when inside her heart breaks for him because he’s going to miss his school trip he was living for. I feel for the mother sitting by her 7yr old on an infusion that we hope will maintain her until a heart becomes available. I feel for that mother wishing for that heart but feeling guilty for wishing the grief on another parent so she won’t have to feel it for her own child.
I feel for the mum who knows she’s not going to get to bring her baby home. That despite best efforts by all there is simply nothing else that can be done, and as she holds her child and life fades away big fat tears roll down my face as I feel utterly useless.
I am in awe of these parents. How they go on, breath, function and learn to live again. These parents have the hardest job. We get to go home…this is their life. And while I don’t know exactly what they are going through I feel for them so much. I think of them long after they have been discharged and I cry for them long after their cherished child has passed away.
Nursing a child with a chronic illness can be intense. You can sometimes feel intimidated by how in depth these parents know their child. Its amazing how insignificant you can feel in the presence of these knowledgeable parents. They know their child inside out, they understand them and their specific condition in a way that nurses or doctors don’t. Yes we know the theory, we know the meds, the procedures, the practices, but it’s the parents who know the child in a truely holistic way and without the parents’ knowledge we would struggle to nurse them in a truely holistic manner. We depend on them. They know if their child’s breathing is just a little fast, or their appetite a little less, or their energy a little dwindling.
So if you are one of these parents always speak up, shout loud if you have to, but get your concerns across. Ask questions, query practice, listen to your gut. You know your child the best and without your input we are at a disadvantage for providing the best care possible.
P.S When we tell you to go for a coffee, or take five minutes out, or go home to your other children for the night, forgive us for being a little bossy. It’s not only your child we are caring for, it’s you too.
Thank-you Ruth, for sharing with us today, and thank-you to all the nurses who care for our children and advocate for our families.