Adulting

This past weekend, I had the honour to be asked to speak at a Mother’s Day fundraising event for Hummingbird House, Queensland’s only children’s hospice.  This is my talk, which seems even more relevant after the start to this week involved yet more “adulting”:

Adulting. Have you heard that word before? Seen it on Facebook? If, like my husband, you’ve never heard of it, it means the practice of behaving as a responsible adult.

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When did you first feel like an adult?

For me, I remember the exact date, time and circumstances.

It was on the 30thof September 2011 at around 2 o’clock in the afternoon.

I was working from home when the nanny came into my office, carrying my six-month-old daughter and said “Miss Z is acting funny and I’m not sure what to do”.

I remember very clearly taking Z in my arms and noticing how she seemed to be having little tremors and her breathing was rapid and strangely rhythmic.

I had no idea what was wrong with her. I had no idea what to do. The only other adult at home was the nanny, and she was looking to me for direction.

“I think we need to call an ambulance,” I said.

The nanny looked shocked. “You mean like 000?”

I was uncertain what to do. After all, I had never had to call an ambulance in my life. As far as I knew, you only called an ambulance when someone had a heart attack or was hit by a car. But calling one because your baby was acting funny? Would the paramedics tell me off for over-reacting? Would the 000 operator even send an ambulance?

I had to be the adult, to make the decision. We called 000. The paramedics did not tell me off. Probably because they were too busy saving Z’s life. The funny behaviour was a status seizure that took over an hour and several powerful drugs to stop. During the hour or more that it took the paramedics and then the Emergency Room doctors to end the seizure, Z stopped breathing twice. She had to be intubated and spent nearly a week in intensive care.IMG-20111007-00011

In many ways Miss Z’s story, and my story as her mother, started on that day.

DSC01577She had been a difficult baby and there were signs, assessments and concerns that came before that horrible day, but it was September 30th, when my husband and I stood in the Resus area of the Emergency Department and watched 18 doctors and nurses working on Miss Z that the seriousness of the situation and the frightening possibility of what lay ahead became clear.

And it was from that day onward that we have had to make difficult, grown-up decisions about our daughter on a regular basis.

Miss Z makes me “adult”.

Her long shopping list of medical issues – uncontrolled seizures, aspiration, fragile bones and severe scoliosis to name just a few –  eventually led to her being diagnosed as palliative. Her condition is life limiting and we don’t know how much time we will have with her.

IMG_4135This doesn’t mean that I have to behave like an adult with Z all the time – as she and her sister will attest. After all, one of Z’s favourite things at the moment is a “Greatest Showman” singalong – and you can’t act like an adult while you’re singing along with Hugh Jackman.

And it doesn’t mean that our life is without joy. Miss Z, and her sister Vegemite, are constant sources of joy and laughter and just plain goofiness in my life.  Z loves her collection of stuffed bunnies, cuddles, listening to ABBA and hanging out with Vegemite. She has a wicked sense of humour which she is only beginning to show us as she learns to use a communication book. And she is known for her wild and crazy hair – which she hates to have brushed. Watching Miss Z and Vegemite enjoy each other is my greatest source of joy.

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But at the same time, as the mother of a child with a life limiting condition, I always need to be ready to take difficult decisions – Will this surgery improve her quality of life? Is she sick? Should I call an ambulance? (you’ll be pleased to know I’m much quicker to call one these days).

And caring for Z is a constant and never-ending job. It includes everything from the basics like changing her nappy, dressing her and trimming her fingernails to drawing up her medication and making sure she receives it at the right time every morning, afternoon and evening.

I’m often up in the middle of the night, helping her to breathe by suctioning her and repositioning her because she can’t roll over in bed by herself. I watch for seizures and give her emergency medication if a seizure runs too long. I take her temperature and monitor her SATS levels and respiration rate when she is unwell.

IMG_0480Caring for Z requires constant adulting.

One of the most important things I’ve learned on this journey is that you can’t do it on your own. Caring for a medically fragile child is hard, relentless and exhausting, and goes well beyond just behaving like a responsible adult.

If anything, being a responsible adult means asking for help.

It was something that took me some time to learn. I wanted to do it all. After all, I’m her mother – it’s my job. I know Z better than anyone else. And I feel extremely protective of her.

fullsizeoutput_3171But I can’t do it all. Not and remain mentally and physically healthy. And being a responsible adult means knowing that I need to stay strong and healthy to make those hard decisions.

This is why Hummingbird House is such a blessing for our family.

Staying at Hummingbird House as a family takes some of that constant weight of adult responsibility of caring for Miss Z off our shoulders. It allows us to spend time enjoying her, rather than caring for her.

It also lets us enjoy some time on our own or giving special attention to Vegemite. And – equally importantly –  it gives Z a taste of independence – a place where she can have fun and a sleepover, without having her mum or dad always there.

That is why, this Mother’s Day, I’m happy to be able to share our story and thank Hummingbird House – and all of Z’s nurses, carers and support workers – who have become an important and valued part of our lives.

And who give me a break from adulting.

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Avoidance

After about three months of Miss Z going in and out of the hospital, it looks like we might finally be seeing the end of her pneumonia. Then again, the bacteria that caused it is notoriously difficult to eradicate completely, so she might just be in a good patch before she goes downhill again. Either way, it is nice to have Z at home and back at school and to be able to sleep in my own bed.

However, this doesn’t mean that we can relax. There are a lot of things still in the pipeline that are worrying and stressful and require scary, grown-up decisions. When you have a medically fragile, life-limited child, I guess those scary, grown-up decisions never stop coming.

But I’m not ready to write about them yet. So, instead I thought I would practice the great art of avoidance and bring you the second in my occasional series featuring Juno, our grumpy, anti-social cat (see here for the first article in the series).  Juno only loves Miss Z – the rest of us are useful for three things: opening the door, food, and occasionally as a warm and squishy place to nap (so long as we don’t move, laugh, sneeze, or breathe too much).

Miss Z and Juno share a mutual appreciation for soft blankets and warm places to nap.  And if imitation is the sincerest form of flattery, then Juno certainly flatters Z with her places to curl up for a snooze. Apparently, Z’s special needs equipment remains the best place to sleep, in Juno’s expert opinion.

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A mobile nap option

Sadly, she’s not allowed on the wheelchair, which means she has to seek other alternatives. The hoist seemed to be a good place, until I lifted her in the air…

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Juno gets a strange feeling of rising up into the air…

And tried out the bath chair as well, but unfortunately, it often seems to be damp…

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With all these challenges, poor Juno is left to compete with Miss Z for the best spots:

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There is a constant power struggle for the beige fleecy blanket

And is often left a bit disappointed…

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Are you finished with my chair yet, Z?

However, at this time of the year, when it starts to get chilly at night, neither Z nor Juno complain about having to share a bed.

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Life with Miss Z is sometimes hard. But nothing in life is impossible with a bit of avoidance and some cute cat pictures.

 

 

 

Big Brother is watching

After three weeks (more or less) in the hospital with Miss Z for pneumonia, the last thing I wanted to do was go back. So, when the Neurology department phoned me earlier this week to check if Z was well enough to have a 24-hour EEG, I seriously considered lying. But I didn’t, which is why I’m writing this from the “Big Brother” suite of the hospital.

Regular 24-hour EEGs are part of the medical cannabis trial. Miss Z had one before she started Epidiolex and is now having another, after nearly four months on the medication, to see if it has made a difference to her brain activity.

The 24-hour EEG is a bit of a surreal experience, however.

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Working and watching Miss Z

Unlike her other admissions, this is all planned well in advance and I am expected to bring everything Miss Z needs with us. That means medication, nappies, wipes, formula, feed pump and tubes, etc. While I’m happy to provide all these things, it means that I have to bring A LOT of stuff to the hospital for an overnight stay. Add to that food and a change of clothes for me. And the shocking number of devices we seem to travel with these days:  Miss Z’s iPad for music and her games and videos, my iPad for downloaded books to read, my laptop for work (can’t avoid it, even when we’re in the hospital), and of course my phone. And chargers. And my new mobile WiFi device, which is great for both working and watching Netflix at the hospital, where their free WiFi is extremely slow…

 

In the end, our bag was so heavy that I could hardly lift it.

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Head wrapped in tape!

When we arrived at the hospital, the technicians prepared Miss Z for monitoring. This involves a lot of measuring her head, marking particular points on her scalp, and then using a number of adhesives to stick electrodes all over her head. They then wrap her entire head in hypafix tape, which can be alarming (to me, Miss Z isn’t bothered). The girl has a lot of hair and isn’t particularly keen on anyone (apart from her) touching it. The first time they did it, I was convinced we were going to have to cut the tape out.  Obviously, the technicians know how to get it out without such extreme measures, but watching them wrap Miss Z’s head with sticky tape still fills me with dread.

Then there is the Big Brother suite where we stay. The objective of the EEG is to monitor Miss Z’s brain activity for a 24-hour period. This is done by the electrodes, which monitor the electrical activity in her brain. However, it is also done by video and sound recordings of Miss Z over the period. This is done by a sinister looking video camera mounted to the wall in the centre of the room and a microphone hanging  above Miss Z’s bed. No privacy for Z.

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Yes, that’s a microphone hanging from the ceiling…

And no privacy for me, either. I have to stay with her constantly. No popping out of the room to get a coffee from the parents’ lounge or nipping downstairs to get some lunch while Miss Z sleeps. I’m expected to monitor her constantly. There is a button I have to push if I think she is having seizure activity (which then marks it on the EEG) and a clipboard to record my observations. If I need to so much as nip next door to the family lounge to heat up my dinner or make a coffee, I have to summon a nurse to sit with Z while I’m out of the room.

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And that’s a camera on the wall, watching our every move…

At the moment, I’m feeling rebellious because I took a very quick shower this morning in our en suite bathroom without asking a nurse to sit with Z (who was fast asleep). As soon as I was dressed, though, I opened to bathroom door so I could keep my eye on her again.

I definitely needed a shower to perk me up this morning, because I didn’t sleep well on account of the lights being on all night. Because the video camera can’t record in the dark, obviously. And I’m not talking about a dim light in the room, the overhead flourescent lights had to be on. All night long.

I think that keeping bright lights on all night is actually an interrogation technique, and now I understand why. It messes with your mind. You wake up frequently. You lose all sense of time. You don’t feel rested. And it is irritating. Just really, really irritating.

Still, it is only 24-hours of monitoring, after which the technicians return to remove the tape and electrodes, leaving Miss Z with shocking EEG hair, and we’re free to go.

As I write this, we’re in the home stretch with only a few hours to go. I’m looking forward to getting home to a bit of privacy…

 

 

 

Life in the hospital

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My poorly little girl

Miss Z managed two days at home before we had to return to the hospital, this time at 3am in an ambulance.

It was one of the more frightening experiences I’ve had with Miss Z. By the time we arrived at the hospital, she had turned white and her lips were turning blue. She was immediately put on high flow oxygen and the doctors were talking about intensive care and asking if Z’s resuscitation plan was up to date. Fortunately, before a bed could be found in PICU, one of the hospital’s amazing chest physios worked her magic on Z, clearing her airway enough that it was decided Z could go to the medical ward instead.

So, we’ve returned to ward 9a, where we’ve spent more time than we have at home over the past 4 weeks…

Life as a parent staying in a children’s hospital is a strange experience. There have been times when I’ve almost enjoyed it. For example, Miss Z was admitted a few weeks ago because her GJ tube had come out and had to be surgically replaced. She was bumped off the surgical list on the first day due to an emergency, so we spent two nights on the ward. Miss Z was settled, the Olympics were on television and I’d just downloaded a new book to read. Being in the hospital was inconvenient, but it wasn’t scary and it freed me from all the tedious chores at home for a few days. I drank a lot of coffee, watched a lot of snowboarding and hung out with Z. It was a relaxed few days.

This time hasn’t been like that. I’ve been worried about Z. And Miss Z has done little to soothe my worries. Over the course of the week she had two big seizures and three desats (where her oxygen levels drop).

The past two years, I’ve felt pretty good about Z, despite knowing that she’s got a life limiting condition and is under palliative care. Now I realise this was because she was (mostly) in good health, so it was easy. The pneumonia has reminded me that health for Miss Z can turn on a dime. At Christmas she was the healthiest we’d seen her, and by the end of February she was seriously ill.

Facing these things while in hospital means you just have to suck it up and carry on. Over the years, I’ve generally become less tearful during stays – not because I’m not as sad, but because I’ve got a thicker skin (or maybe have just become a bit emotionally numb) after going through so much of this before. Still, there are moments in hospital of real sadness, fear and anger that Z had to go through this.

I saw this video some time ago and it really shows those moments of overwhelming sadness that come with having a sick child in the hospital.

However, our recent stays in hospital haven’t been all raw emotion and ugly crying. In fact, most of it has been tedious boredom, if I’m perfectly honest. And the consumption of vast amounts of coffee. And stealing sneaky naps in bed with Miss Z, when I claim I’m just trying to settle her. And endlessly fiddling around on social media. And trying to squeeze some work in between the Paeds round, chest physio and music therapy.

It has also been an amazing testimony to the kindness of others. I’ve really been touched by the texts and calls from so many people offering help. The visitors we’ve had that have brought me coffees and muffins. The friend of a friend who brought me a coffee after learning on Facebook that I was stuck in our room (Z can’t be left unattended). Our care workers who have put in extra hours to make sure that Vegemite’s week isn’t overly disrupted. The nurse who came straight to Emergency when she found out Z had been brought in during the night, who gave me a hug and then kicked me out of the room to get fresh air and a coffee. The chest physio who found and dragged a recliner to Z’s room so I’d have somewhere comfortable to sit and cuddle Z.

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My beloved recliner…

And then there is one of our support nurses who brought me a coffee and a selection of cheese and goodies (apparently leftovers from a meeting – but I’m definitely not complaining).

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Morning tea treats

Staying at the hospital also makes you realise that you’re not alone, but nor are you the only one with worries. I regularly cross paths with a mum in the parents’ lounge who is staying with her teen daughter, who has an eating disorder. While heating up my dinner last night, I listened to a mum who needed to unload about her child, who had just been admitted with a severe asthma attack and was being assessed for admission to PICU.

And then there are the nurses of 9a, who have been kind and comforting and kept me laughing through the past two weeks, as well as providing top rate care for Miss Z.

With a little luck, Miss Z and I will be heading home in the next day or two. Here’s hoping that this time we can stay home a little longer.

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A not-so-great start to the year

My favourite number is 18, which sounds quite silly coming from a grown woman. It has always been my favourite number, for no particular reason. So, when QB and I had to pick a date for our wedding in mid-August, I chose the 18th. When Miss Z was given the expected due date of 18 March I was convinced my favourite number was also my lucky number and she’d arrive on time. I was proved wrong, with Miss Z demonstrating from the start that she does things on her schedule, arriving 11 days after her due date.

Still, I was hopeful that 2018 would be our year. And initially, it looked like I might be right.

Our Christmas was brilliant. Miss Z, on cannabis oil, was seizure free, alert and interactive. This is a big change from previous years, where she has been poorly, unsettled and plagued by seizures. One Christmas she screamed for more or less the entire day. Another Christmas, she had a major seizure and we had to call an ambulance.  Last Christmas, we considered it a “success”, because she only had one seizure (when opening presents) and spent most of the day asleep.

This year far exceeded any of that. She was happy. She admired her gifts. She grinned at her sister. It was the first Christmas where I felt she actually enjoyed the holiday.

After Christmas there was a bit of a hiccup in our plans. Miss Z was waking up throughout the night, coughing and needing to be suctioned. She was also running fevers. We were planning to go on holiday later in January, so I took Miss Z to the GP (general practitioner) and she was diagnosed with a chest infection and put on antibiotics to clear it up.

After nearly a week on antibiotics, she was still getting fevers and coughing a lot, so I took her to Emergency to be checked out. They did a chest X-ray and found that she did indeed have an infection. They changed the type of antibiotic and sent us home. The medication seemed to work, the coughing reduced and the fevers stopped.

And so, we headed off on holiday. Usually, holiday breaks are a bit of a challenge for us because accessibility is such an issue for Miss Z (accessing the holiday house, the beach, restaurants and cafes, etc). Plus, Z is a total homebody, so isn’t interested in going out sightseeing or doing anything adventurous. This year, however, we found a great holiday house close to the beach and it was warm enough that Miss Z managed to get in the swimming pool a couple of times (it’s usually too cold for her). Plus, there was a long beach-side walking path that both Z and our dog Ben loved strolling along every day.

Towards the end of the week, Miss Z started to go downhill again. She was coughing more and ran a few fevers overnight. Nothing too alarming, but by the time we got home, it was clear she wasn’t over the infection. Then she began to have periods of difficulty breathing. We returned to the hospital, where they confirmed she still had pneumonia and she was prescribed a longer, two-week course of antibiotics.

Again, things seemed to improve and then slide backwards. Another return to hospital showed that there was still a considerable amount of fluid on her lungs – particularly her left lung, which is the one that is slowly being crowded by her scoliosis. Her paediatrician wanted to admit her, but the Respiratory consultant suggested trying a different 2-week course of antibiotics.

And once again, Miss Z started to improve and then decline again.

So, here we are back in the hospital. And this time it looks like we will be staying for a while in order to give her a “tune up” (their words, not mine!) with a long course of intravenous antibiotics.

Throughout all this, Miss Z has only made it to school a handful of times since the new school year started in late January. And I have been struggling to balance work with an unwell child at home – and sleep deprivation (since the unwell child has needed assistance regularly during the night). All in all, it hasn’t been a good start to 2018.

I just hope that 2018 isn’t a repeat of 2015… That year started out in a very similar fashion and ended up with Miss Z being in and out of hospital with various chest-related illnesses throughout the year. It was also the year that Miss Z was diagnosed as being palliative. It was a long, hard year.

I’ve been reading my blog posts from that time and my heart aches that we seem to be returning to that place again. This was not meant to happen in 2018. Miss Z had been clear from serious chest infections for two years and we had finally begun to get her seizures under control.

2018 was meant to be about furthering her communication abilities and improving her quality of life. It was meant to be about enjoying watching her interact with her sister. Not watching her sleep in a hospital bed for hour after hour, connected to an intravenous drip.

It is only February, only two months into the new year. There is time for the new treatment to take effect. There is time for her to recover and have the fantastic year that I had anticipated for her. But writing this in a silent, over-air conditioned hospital room while Miss Z wheezes in the background, I worry.

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