Medical

needs: Referrals.

My beloved says “we take advice and do our best”. I always feel like that is unsettling. I whirl and twirl finding the right person for the right thing, and then jump through imaginary hurdles to get the appointment. “We take advice” feels like we only do what we are told. “We do our best” is the beginning of wanting to do a little bit more, a little bit better… It’s an unsettling, edgy feeling that probably comes from failing her. You can imagine how that plays out on a book week costume…. I’d love to declare it stops there, I won’t seek the impossible, I will do a good job, done well, rather than a relentless pursuit of perfection. But that will last for a week and I’ll be miserable. I know that its my crazy. I also know that being aware of it, helps me find some balance between the unrelenting force to do more than “our best” and nurture the peace that comes from “that will do just fine”.

The thing is, seeing someone new with my girl is tricky. I take some convincing. I need to know whether they know what is going on in a pragmatic cover all bases way or if they are running off a feeling, while hanging dream catchers. I need to know if they are going to work against the rest of her team or if they play nice with others. I’m a 10-point plan Mum rather than a wait and see fairy. A referral, simply put, is direction towards more advice. Sometimes that professional advice crystallises my hunch and gives me a plan. Other times advice drowns out common sense and frazzles the life balance.  All referrals lead her to a new room, with a new person, talking about a problem with her.

She was having a good run neurologically but the aches and pains required more Panadol and Nurofen than I liked. Our awesome GP prepared a referral with her eyes on the screen. I filled the gaps in the one size fits all referral document and had eyes on my girl. I confirmed the diagnosis, treating specialists, medication and previous plans. My girl took it all in. Later, I signed for Medicare and rebooked while she gushed in whispers. She didn’t understand, and she didn’t want to see another person, and she was hungry. We rushed to pick up her brother late, had a call from my beloved asking me to text photos to Grandma and the referral drifted deep into my handbag. 

The GP (Appointment 1) referred my girl to Rheumatology at the Children’s Hospital (Appointment 2). Rheumatology referred her to the Paediatric physio (Appointment 3) who was just lovely except for the bit about referring us on. We followed the “next right thing” guide and went to see the Podiatrist (Appointment 4). He was methodical and considered and I was at ease. We talked all about a “ground up approach” and proprioception.  3 months later (Appointments 5-8) she got orthotics. During this time, we continued with the Paediatric physio (Appointments 9-12) and physio equipment bounced around our home. Then one day the Paediatric physio suggested a breathing physio. I made a phone call and after hearing more about the fee structure and the need to see my girl during school hours, I took a beat.

I considered having to tell the background again, having to miss school, the expense, the car time, the impact on her brother and that the person I was speaking with didn’t leave me thinking this was actually going to help.

3 years on and her team fluctuates but I keep it locked down like a night club. One in One out. Appointments are restricted to reduce missed school. I ask about fees and rebates so we are prepared for the bottom line. Occasionally I dip into something for a term, and retire it when we need to. Our new GP knows the back ground and prepares the referrals with my girl so she knows who she has to see and why. Funnily enough, we found a brilliant Breathing Physio, and she has been life changing.  I think my beloved is right, “we take advice”. I will even admit “we do our best”, but my best is about balancing an acceptable level of inquiry and therapy with an awesome level of craft, bushwalking, kitchen dancing and sleepovers. Kid first, patient second.

needs: Her first EEG.

I had a little nudge since my girl was 6 weeks old. She slept so much, but “you never wake a sleeping baby”, and she was so distracted but “she’s just dreamy” and then later, she was slow to roll, sit, walk but “they all get there in their own time”.  Every time she was out of step, I secretly yearned for the key that would unlock things for her. So, when her Marx brother’s paediatrician suggested she needed a brain scan, part of me was relieved. He gave me a bit of paper and said I would need it on the day and it fell into my mother-lawyer bag between a file and a bottle of bubbles. Dr Oddball said he would make the appointment and I would be contacted by the hospital. After hot chocolate, I took her to school and I went to work.

Busy family-work life distracted me for 3 weeks. We heard nothing, but that was back in the days where we believed no news was good news. I contacted the hospital. After some transferring and hanging up, I navigated my way to the right department. I learnt there was a long queue for an EEG and she wasn’t in the queue.  After googling EEG, I tried to call Dr. Groucho and was phone blocked by his gatekeeper. She adamantly insisted the request for EEG had been made 3 weeks before. I called the hospital again and they confirmed a request had not been made.  I called Dr Zeppo’s gatekeeper. She said to leave it with her. I thought I already had.  After I cooled off, I called the hospital to repeat the transferring and disconnections until it was confirmed the request had just been made. My gratitude swam down the phone. 2 hours of chasing and my girl was in the queue. With mission accomplished I was ready to hang up and barely caught the fact that there was a 3 month wait and even then, she could be bumped for emergent cases. For a second it seemed like I had spent a morning trying to get something, and once I got it, it moved out of reach.

Months passed, and the concerns that lead to an EEG request became more prominent because I couldn’t get her one. Finally, the day arrived. I grabbed her from school and drove to the hospital. I had 3 work calls to make before we got there so I was playing with her hands, driving and arguing about contracts. We slid into a park after my third lap of the car park. Pulling on her little hand while finding change, getting a ticket and bolting into the hospital was a means to an end. Until, she stopped at the door. I had overlooked that the test was in a hospital.  I realised I hadn’t told her what to expect. I tried to give her little facts while working out which lift, what corridor and following the pink floor lines. By the time we got to neurology, she was wary. The nurse beamed at my girl, who warmed up a little. I beamed back and was shut down pretty quick with a “You’re late, we were about to cancel.” I looked at my girl apologetically and she glared at me.

I handed in my crumpled bit of paper from Dr Harpo and after some waiting around a nurse showed us into a room with a hospital bed and we were told to wait.  We looked around the room. I was hungry for facts and she was scouring every corner. The walls were littered with stickers, mobiles, bears and movie posters.  There was nothing new. It was all old and sad and looked like the kind of things grandparents think kids will like and maybe they do, but not for not long enough to warrant sticking up. My problem-solving brain went into hyper drive. Why doesn’t a toy store or a movie distributor sponsor this place? I snapped back to the room, to her. Her eyes were shiny, and they skipped across her Disney friends, even the ones she had outgrown who were there waiting for her. 

A different nurse arrived and was organising things while asking a lot about her brother, school, pets (we should get one of those I thought) and my girl chatted back.  I could see she was not at ease but when the nurse explained the next step was sticking little metal buttons on to my girl’s scalp connecting her to wires that were connected to a machine, wonder spread accorss her face. It was confirmed that this would not hurt, and she ruffled with relived. My mind scattered to a dark place, an unwanted thought I was letting them to do this to her and I didn’t know what was coming.

That EEG went for a little over 60 minutes. She was exposed to strobe lights. She was asked to blow windmills to the point of hyperventilating. Her eyes darted to me, desperately as distress engulfed her. I didn’t know the aim was to create a perfect storm for seizures so they could be recorded. Suddenly, that part was done and without time to reflect the lights were turned out. Sleep readings were next and we were left alone to get her to sleep on command.  I let her suck her thumb and stroked her head. I whispered into the darkness until her little mouth gave way to her heavy exhale and her sleeping breathing wafted over the room. Once she was out, I twisted to put my head beside hers.  Tears flowed as I gazed at her, plugged into a machine, hopefully dreaming.

The lights were turned on. The buttons were efficiently removed and we could go. She was dazed and frayed at the edges. I was conscious they needed the room, and rushed to dress her uncooperative little body. She held my hand tightly and even though I hadn’t carried her in an age, I lifted her snug into my neck as we charged to the car. Tucked in, she fell asleep before I shifted into reverse and I had one of those silent driving cries.