Thursday, 29 September 2016

From Headache to Intensive Care - A Lesson in Trusting Your Instinct

“Mum, I’ve got a headache”

It was a reasonably innocuous declaration for a typical Sunday evening and I treated it that way, initially.

“Ok hon. Well, lay down next me and have a rest”

As he lay there, wincing, I went through my tried and tested ‘Mother Triage’. No temp, no swollen or tender glands, no rash.

“Is there anything going on at school tomorrow that you’re worried about?”

“No. But Mum, it’s REALLY bad. And my head is super itchy!”

Oh. God. No. Itchy head = lice. Lice = my greatest fear (at that point). I begin, somewhat frantically, combing through his hair like a gorilla. It’s a totally clean, non-infested head. So I give him a dose of Panadol and have him rest his itchy, sore head on my lap while I wait for the paracetamol to take effect.

An hour later and he’s still hurting. And wimpering.

“It feels like there’s a war going on inside my head Mum. Like I’m being punched from the inside.”


I sat and watched my youngest son, screwing up his face in apparent pain as he lay on my lap. He’s not one to complain unnecessarily BUT he is known for his drama.

“Ok, so what else do you feel? Can you see properly?”

“Yes. I mean, no. I mean I can see straight ahead but it’s fuzzy all around the edges.”

“Anything else?”

“My ears are ringing. Really loud.”

I sighed. I was looking forward to heading to bed early after TWO nights out in a row [unheard of these days] and now it looked like I had a late night ahead of me. I left him on the couch while I put my shoes on, grabbed some water and my phone charger and put my coat on.

“What are you doing?” asked Mark.

“I’m taking him in to emergency.”

“What? For a headache?? Why don’t you just call a locum and wait to see what they have to say?

“I don’t know. I just really feel like he needs to go to hospital. I feel like we need equipment or something to have a look at him.”

Mark frowned but he was used to me following my instinct, particularly when it came to our kids.

“Ok. Drive safe and let me know how you go.”

I have to say that bundling Stefan up in the car, just after 9pm on a cold Sunday night did seem a bit over the top for me too. I second guessed myself the entire way to hospital and continued my questioning of Stefan at every moment. In fact, I got close to almost threatening him with hospital, “Do you still have your headache Stefan? Because we’re GOING TO HOSPITAL you know and I’d HATE TO GET THERE and you suddenly tell me it’s gone away and then I FEEL LIKE AN IDIOT.”

“Yes Mum. I still have it and it hurts so much. Oh and my head is soooo itchy. I can’t stand it Mum!’

So I park the car and head into emergency. I almost apologetically tell the triage nurse why we’re there but I find more confidence when I tell her that I just feel that something is not quite right.

I have always believed in the power of intuition and it has never been stronger in me than since becoming a mother. I think that’s largely due to the innate sense of protectiveness and hyper-vigilance that seems to kick in once a baby starts growing inside your guts.

If nothing else, then this story is evidence that my instinct to trust my instinct is right.

The triage nurse did not bat an eyelid when I told her why we were there. She didn’t look at me like I was an overprotective mum or a fruitcake or someone there to waste her time. She didn’t make me feel like an idiot. She processed me quickly and efficiently and sent me straight through to paediatric emergency and within minutes we were ushered into our own bay and another nurse was asking what brought us to her on this cold Sunday evening.

As I repeated my story, she wrapped a Velcro band attached to a monitor around Stefan’s insignificant tri-cep as he lay on the bed and waited to record his blood pressure, all the while chatting to us about the symptoms that caused us to head in to emergency. She measured once and then turned the machine off and on again, repositioned the cuff and measured again. She asked how long he’d had his headache for, any other symptoms… y’know, the usual palaver. Then she excused herself with a sigh and returned with a manual blood pressure monitor. The kind you pump up with your hand and measure with a stethoscope and clock.

That’d be right” I thought begrudgingly to myself “The fucking machine is faulty

Of course, there was no rational reason for me to think that. I had never come across a faulty machine during any of my trips to hospital previously but it was Sunday night and I was tired and I was still second guessing myself for being there at all.

The nurse excused herself AGAIN (“what the fuck is she doing? Is she new? I don’t want to be here all night!”) and returns about 8 seconds later with a doctor in tow.

FINALLY… some proper medical attention!” my mind roars as my face feigns holy mother patience.

The doctor is calm and gentle and speaking to me like I’m a mental patient which at the time just seemed like a very reassuring bedside manner.

“Hi” he says smiling kindly.

“Stefan has quite high blood pressure and we just want to check some things out” he says gently.

“Oh, I see” I say, though I don’t see at all. What does he mean ‘high blood pressure’? Can kids get high blood pressure? And so what if they do? He’s probably just a bit anxious about being in hospital. Don’t talk to me about high blood pressure, tell me what’s wrong with his head!

And then the world kind of tipped a bit as I notice, during my reverie, that the nurse is frantically writing down all of Stefan’s details [blood pressure levels etc] which in itself is not unusual. Nurses in emergency departments are always recording their patient’s details and statistics aren’t they? The correct answer is ‘yes’ but it was WHERE she was writing them down that caused a momentary lapse of reason in my heart.

She was writing his obs, in pen, ON THE BEDSHEET of the bed just by his feet.

What the fuck is going on here??

Meanwhile, the doctor is still calmly speaking to us all like Stefan has a runny nose and simply needs a box of tissues.

“Are they ready for us next door?” he gently asks the nurse writing on the bed.

“Yep, they’re waiting”

And just like that, they’re wheeling Stefan’s bed out of paediatric emergency and straight into an area called ‘RESUSC’ [that’s short for resuscitation people!] where two nurses and 750 monitors are waiting, expectantly for our arrival.

Shit. Just. Got. Real.

“Hello Mum” one of the nurses says kindly as they both buzz around the bed placing sticky pads all over Stefan’s, suddenly, tiny frame “What’s your name?”

It feels surreal for me to answer all the questions as I watch every move they make and follow their lead on tone and behaviour. My Stefan is the kind of kid that was born incredibly tuned in to the universe. Some would call him an ‘old soul’ and others may even tag him as a young ‘empath’. I’m not sure what to call him but he has always shown an innate accuracy when it has come to reading the mood of a person – and sometimes even an animal! I knew that he was looking to me for reassurance and guidance on how he should be responding to this very unusual and intense medical attention. So I did what any good mother would do and flat out lied to his face.

“This is totally normal hon. Every kid with a bad headache ends up in here. You’re FINE.”

But he wasn’t fine. He was very, very far from fine. The doctor explained that a boy of his age, health and size should have a blood pressure reading of about 95-100 over 60-70. Stefan’s current BP was 230/150.

He was going to explode.

“We’ve been liaising with the renal consultant on call and have organised a bed in the Paediatric Intensive Care Unit (PICU) at Women’s and Children’s” the Calmest Doctor On Earth explained to me.

“Renal?? He’s got a HEADACHE and HIGH BLOOD PRESSURE. There’s nothing wrong with his kidneys! Why are you liaising with a renal specialist? And why have you organised a bed at WCH? If I wanted to go there I would’ve taken him there. I like this hospital.”

Don’t ask me why I was digging my heels in on that. I’m a bit closed minded on some things. I brought him to the hospital he was born in. I like it. I know it. Now they want me to go a hospital that I don’t know or like. But I have no choice. It is the only hospital that has a PICU. And it’s where the paediatric renal unit is situated. Why renal? Because, I have since learned, that any time a child has high blood pressure or hypertension then it is AUTOMATICALLY an indication of kidney issues.

“FINE. I’ll take him there then.”

“Ummmm…. YOU can’t take him anywhere. We’ve organised the MedStar team to collect him. He needs a doctor to travel with him.”

And at 3am that is exactly what happened. A team arrived with transportable monitors and wires and flanked my little boy’s stretcher as they wheeled him into the icy night and through the back doors of the waiting ambulance. The roads were quiet at that time on Monday morning and we had a doctor on-board so thankfully, this wasn't an emergency requiring the sirens. There was no room for me in the back so I rode up front with the very reassuring driver and heard, for the sixth time (at least) that night, just how important it was that I acted on my instinct to take Stefan into hospital.

“So if there were no other symptoms, what WAS it that made you decide to bring him in?” was the question I was asked repeatedly throughout our time in hospital. My answer has always been the same. It was quite simply a feeling that something wasn’t right. Something wasn’t normal. It wasn’t one thing but a combination of things that led to a deep uneasiness within me. And even though I second guessed myself the entire way in to hospital, I still kept going because I would rather be turned away for being over-vigilant than hate myself for all eternity for not listening to my gut.

I will forever be grateful to the very first nurse that met with us who caught the symptom immediately. Not satisfied with what she was seeing, she triple checked herself before referring it further. The whole process took less than half an hour from when she first said hello to being ushered through to RESUC. She didn’t falter, she didn’t panic and she didn’t cut corners. That’s what you want on your medical frontline.

From that very moment I have not been able to fault the medical care my son was given. In the three days that we were residents of PICU we came across an insane number of doctors, nurses and specialists. Stefan was seen and ultimately cleared by a cardiologist, ophthalmologist and endocrinologist all under the management of an entire nephrology team. He had a new nurse every shift who monitored him around the clock and their ‘handovers’ were conducted with the efficiency and detail you would expect for someone requiring intensive care. I know because I stood at the nurse’s station and listened to the reports and observations for every single handover.

Nothing was left to chance. As he adjusted to the frightening amount of daily medication required to suppress his screaming hypertension, he had a CT scan, a nuclear scan and an MRI. His blood pressure was monitored by a line that was inserted directly into his artery and connected to monitors which were checked every hour on the hour. They took urine samples, blood samples and saliva samples. They monitored his oxygen levels, his fluid intake, his heart rate and his neurological responses.

As uncomfortable as it was sitting (literally!) at the bedside of my son for days on end, there was nowhere else I would rather have been. I knew that we were in the best place for the safety of my son and the confidence that I had in the care he was receiving was everything that I could have hoped for.

So… WHAT was the problem?

Well, as it turns out, we have discovered that Stefan has one kidney smaller than the other (likely born that way) and therefore not operating at its full capacity. After a week on the ward, he was discharged as a renal outpatient and now lives a ‘normal’ life thanks to taking three separate medications morning and night to manage his high blood pressure. We visit the renal unit in hospital regularly where they keep an eye on any changes and readjust medications accordingly. The prognosis is that he will require medication indefinitely, however we have already reduced it several times as he levels out and I have faith that we will continue in this direction until he is on an absolute minimum.

Which all translates to him being just fine. But from big dramas, life lessons grow! And I’ve got a few pearlers, just for you.

First up is an obvious one. TRUST. YOUR. INSTINCT. Listen to your gut. When nothing makes sense, act. Do not wait. Do not fear over reacting. The message I got loud and clear from every single medical person I have come across since that night, is that my action saved my son’s life. A life that I had NO IDEA was in jeopardy.

The second one is also reasonably typical. SEIZE THE DAY. Spending days and nights in hospital with nothing but your suddenly sick child, the clock and heart monitors to look at is particularly sobering. There were a lot of thoughts that began with “IF we get out of here…” which thankfully progressed to “WHEN we get out of here…” and ended with all different versions of “I’m going to take the family on holiday/spend more time/be more present/work less/be more patient/eat better/be more active…” You get the drift. Since everything has settled down, I have indeed done a lot of those things and we’re all feeling better for it. But I know I shouldn’t have to wait for tragedy to nearly strike before I’m reminded of all those things.

The last one is a lesson taught to me by my 9 year old son. SURRENDER. It would be no surprise to any of you that a child has a very different perspective to danger than a grown up does. During those days in hospital we were learning new things about his condition hourly. When I heard new, scary things my mind went to some very dark places and my knee-jerk response was to take over. I needed to SAVE my child. I needed to PROTECT him. I needed to FIX him. But whilst Stefan was taking cues from me, I was also taking them from him. When he learnt new, scary things – he was calm. He didn’t go anywhere dark. He listened, understood, processed and laid himself bare. The lesson I learnt from him is that there is a peace in surrendering to vulnerability. His innocence and his faith in those that knew more than him kept him calm [which incidentally is very important when you have high blood pressure!] and they kept him positive. He went through some really confronting and terrifying things but he didn’t second guess them and he didn’t overthink them. It was truly an education in attitude and self-preservation which I am grateful to him for.

And hopefully, this is the last time I’ll ever have to learn those lessons.