Advocating in Pyjamas!

Published as part of our communication in Neonatal Care Week | 23rd February – 1st March 2015

A&E prior to admission

A&E prior to admission

It’s 3am in the morning. You’ve tried to catch some sleep as you listen out for bells and buzzers and hear the gentle shuffle of the nurse as she tries not to wake you. It is your second night in hospital.

You are grateful that she tries her hardest not to wake you (I’ve experienced some that don’t), but you are conscious that things are changing.

Your ex-30 weeker has been admitted with the winter bug, RSV; the nasty one that effects so many children born prematurely. You’re on a three hourly routine of nebulisers, your child is exhausted, they need oxygen and you can hear that they are not well.

nebuliserAnother nebuliser is given and your child cries out as they are disturbed from their unsettled sleep. The sound of fast flowing oxygen, monitors beeping and the background hum of the hospital rings in your ears. Is it the memories of NICU that are making you feel increasing anxious, or are your instincts as a mother telling you something else?

The nebuliser comes to an end – “I think he’s getting worse” I say to the nurse. She nods her head and tells me that she has already bleeped the doctors to come and review him.

He takes some time to settle again, for his breathing to restore to some sort of pattern and for the coughing and chocking to subside. The bells ring again as his need for oxygen grows greater. “He seems worse after every nebuliser” I say to the nurse.

She’s spoken to the doctor again, (they’ve been called to an emergency in A&E) but they’ve said to increase the frequency of the nebulisers as he’s getting worse.

“But I think he gets worse with the nebulisers” I repeated in a quiet voice as children in the beds around us are asleep – hospitals are funny places at night.

Communication between a nurse and parent isn’t solely about the language or words that are used, it is about the relationship and trust built between the two. As a parent you ensure your child’s care to them and as such need to believe that they will listen to your concerns, act upon them and where necessary communicationadvocate on your behalf. That night our nurse listened, she could see herself that he was struggling more and more after each nebuliser, but she also knew (like I did from previous respiratory admissions) that the usual practice would be to increase the frequency of the nebulisers.

We talked in hushed voices, I felt like she valued my opinion. I shared my theory that the nebulisers disturbed him from an already unsettled sleep. They made him agitated, cough and cry. His breathing rate would increase and he would struggle more and more. My instinct as a mother was telling me that he was shattered and needed rest.

Two hours later he finally seemed to settle again. His breathing was easier and he needed less oxygen; but it was time for his next nebuliser and I felt sick.

“I think it’ll make him worse again” I said to the nurse.

“Would you like me to call the doctor again?” she asked.

She looked at me from where she stood by the telephone and shook her head. The doctor wanted to press on with the next nebuliser.

As she told me of the doctor’s plan she paused, she wanted to hear my thoughts. She almost gave me an opportunity or even permission to say that I was not happy with the plan. I was grateful to her for giving me this opportunity – “I don’t want him to have it” I said.

This made things easier for her too; she also felt now that the nebulisers were hindering rather than helping his recovery and my response gave her a stronger case to go back to the doctor – mum isn’t happy with the plan either, we would like him to be reviewed.

As a parent you are you child’s number one advocate, but that night having a nurse who listened, responded and trusted my instincts as a mother who was used to hospital admissions I had someone to advocate not only with me, but also on my behalf.

With the lights down low, I stood in my pyjamas while the doctor examined my son.

You feel vulnerable, tired and begin to question your own judgement. It’s the early hours of the morning, your in your night clothes, you can’t possibly know more than the doctor…. but they are here now, re-assessing your child at your request.

Just like the nurse the doctor listened to my concerns, my reasoning and took on board my plea to let my son rest and recover. They agreed and although he still needing oxygen he sounded settled. They would leave the nebulisers for now, change to inhailers and review in the morning.

It was a long night, but I felt so supported by the nurse looking after us in the small hours. Not only could our experience have been very different, my sons wellbeing could have continued to deteriorate had I not felt able to speak out knowing that my opion was valued, trusted and would be listened to. The nurse had facilitated the communication between us and established the all important trusting relationship early on, that was the key – and in whatever setting, NICU or beyond, COMMUNICATION is KEY.

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