The fourth anniversary

Miss Z, just home from the hospital 4 years ago today

Miss Z, just home from the hospital 4 years ago today

It was four years ago this week that Miss Z had her first seizure.

She was six months old and we had only just found out there was something “wrong”. But we had no idea what that meant or how “wrong” would manifest itself until that first seizure.

Looking back on that day, it is amazing to think how naive I was. The nanny came to my office door (I was working from home), carrying Miss Z and saying “something is wrong”. I held Miss Z and had no idea what was wrong – although clearly something was not right. She was breathing in a strange, rhythmic pattern, her eyes were fixed to one side, and she was twitching. It never occurred to me that it was a seizure. I’d never seen a seizure.

After watching Miss Z for a moment, I stated the glaringly obvious: she needed a doctor. The nanny asked if I thought we should take her to the GP or the hospital. After considering for a moment, I said “I think we should call an ambulance”. Then the nanny and I both paused. Neither of us had ever called an ambulance for anything before. It felt almost like we were doing something wrong by calling. After all, surely Miss Z wasn’t so unwell that she needed an ambulance? Weren’t they for car crashes and people keeling over from heart attacks? Making that call felt like an over-reaction.

Of course, making that call also saved Miss Z’s life, though we didn’t know it at the time.

(I now use that story as a parable to explain to anyone new to caring for Miss Z why they should never hesitate to call an ambulance if they think something is wrong.)

Once the ambulance arrived, we were blue-lighted to the hospital. I sat in front with the driver while two paramedics worked on Miss Z in the back. QB was waiting for us at Emergency. We were all ushered into the “resus room”. At one point there were nearly 20 doctors and nurses in the room. Miss Z stopped breathing twice and they decided to intubate her.

I left the room. QB didn’t – he told me later (much later) that he didn’t leave because he thought she was going to die.

But here’s the thing – it never occurred to me that she might die. I was scared and upset, but I never thought something tragic would happen to her. It wasn’t motherly intuition, I didn’t have some sort of deep maternal connection that told me things would be OK. It was naiveté. I just didn’t think something that awful could happen to me or my daughter. After all, she’d been perfectly fine yesterday…

After two days on a respirator in PICU, Miss Z was able to breathe on her own and we were moved to a regular ward for monitoring. On my birthday – four years ago today – we were finally given the all clear to go home.

The doctors suggested that the seizure may have simply been triggered by a fever and (although I had my doubts that she had actually had a fever) I agreed it must be the case. It never occurred to me that epilepsy might be one of the things that was “wrong” with Miss Z. It took several more seizures in the following weeks and months for me to realise that.

And I initially didn’t want her on anti-seizure medication – I didn’t want drugs messing with the balance in her brain. It took some time to accept that the drugs were correcting the balance in her brain, not messing with it. And that these drugs were going to keep her healthy… and alive.

Since her first seizure more or less coincided with my birthday (and a fairly landmark birthday at that), looking back I realise just how much things have changed and how much more I understand and accept now than I did those four years ago. It has been a long, difficult and stressful road since then – and we’ve never known what was around the corner. My vocabulary has evolved from “something wrong” to lengthy discussions on gastrostomy tubes, developmental regression, bisphosphonates and bronchiectasis. I’ve gone from staring blankly at my child, having no idea what to do, to someone who this morning calmly managed a 4 minute seizure in the middle of our nebuliser and chest physio routine.

I wish I could say the experiences of four years ago have made me a better, stronger person, but I don’t really believe that. I’ve simply become better informed and more experienced. I’m not as naive as I once was. But I am better equipped and able to manage whatever the next four years may bring.

School holidays

While most of my friends and family in the US and UK have been sending their children off for a new school year, here in Australia, it has been the spring school holiday. That means one more term until the long Christmas/summer break (I know, I can’t get used to Christmas being in summer either).

I love school holidays: the extra hour of sleep in the morning, no school lunches to prepare, freedom from homework and spelling lists and home readers (no, I don’t personally do these things, but I do have to supervise them, which is even less fun), and greater flexibility on bedtimes.

But most of all, I just enjoy spending time with the girls. No pressure, nowhere we have to be and nothing we have to do – just hanging out together. At the risk of sounding like a boastful mother, they are two fantastic little girls, and there is nothing better than spending time with them – especially when they’re together. The only thing better than enjoying their company is to watch them enjoying each other’s company. Watching Miss Z tickle Vegemite by rubbing her face on her tummy has to be the funniest thing I’ve ever seen.

Our first week, Miss Z was still under the care of Hospital in the Home, so we weren’t able to get out and about much. So, over the weekend Vegemite and I went shopping for a bunch of arts and crafts supplies and spent the week making stuff like decorated t-shirts, dream catchers and beaded name plates for the girls’ bedroom doors. We also managed to visit Hummingbird House, present them with the money raised by Vegemite’s class, and get a tour of the construction site that will soon become Queensland’s first children’s hospice. It was a productive week.

The second week, I knew Vegemite would be getting bored hanging out with her mum and little sister, so I made sure she had a few activities planned. She had an early morning swim clinic every day, attended a drama workshop where she participated in making a music video, and did two days of art classes with one of her best friends. And this was fun, too, because I love to hear about all the things she’s done and the people she’s met.

The school holiday was also an opportunity for me to make up for lost time. I haven’t been able to spend a lot of time with Vegemite lately because Miss Z has been in the hospital so much, so it was good to give her my attention – while I tried very hard not to spoil her…

It also gave me an opportunity to repay some of the many, many favours that the mothers of some of Vegemite’s friends have done for me over the past few months. We would not be able to survive without the kindness of a few people who have stepped in when a Z emergency has arisen. They have no idea how invaluable their help is in these situations. Knowing that there is someone to collect Vegemite from school, cheer for her at a sports carnival, or feed her breakfast and take her to school, is a huge weight off our shoulders. And it is so much more fun for Vegemite than before and after school care…

Holidays – especially when Miss Z is healthy – are a great time to repay a few debts by taking their kids off their hands. And it is a good opportunity for Vegemite’s friends to see Miss Z at home – where she is happiest – because I really want Vegemite’s friends to feel comfortable around Miss Z. So, we organised playdates (and even a sleepover) during the two weeks.

It didn’t always work as well as I’d like it to, of course. I had a car-full of kids to take to art class when the sat-nav sent me in the wrong direction and Miss Z started vomiting in the backseat. Vegemite, who I’d seated next to Miss Z for precisely that reason, managed to nobly catch everything in a sick bag like it was no big deal. And I somehow managed to navigate the car to the right place, unload all the children (including Miss Z) and shepherd them all up a flight of stairs (no disabled access in sight) before the class started. Plus, I made up for the rocky trip to class by buying everyone an ice cream when I picked them up (added benefit – I got one, too).

Even with the occasional mishap, the school holiday was just what we all needed. School re-started with a bang today, making me long for those peaceful two weeks as I tried to mop the vomit out of Miss Z’s hair whilst repeating “Vegemite, brush your teeth. I mean it, we need to leave in TWO MINUTES” like a mantra.

How many weeks until the next school holiday?

So very far from being ready to leave in 2 minutes...

So very far from being ready to leave in 2 minutes…

PICC-less and fancy free

Miss Z before going home from the hospital - nebuliser on face, PICC on left arm and cannula in right hand. Can't imagine why she doesn't like the hospital...

Miss Z before going home from the hospital – nebuliser on face, PICC on left arm and cannula in right hand. Can’t imagine why she doesn’t like the hospital…

For the past two weeks, Miss Z has had a PICC line. This is a type of central line that is inserted into her upper arm and runs in a major blood vessel to just outside her heart.

The purpose of the PICC was to give her two weeks of intravenous antibiotics without having to put multiple cannulae in the tiny, fragile veins in her hands, arms and feet. Miss Z’s respiratory and medical teams had decided that an intensive course of antibiotics was the best way to kill off as many of the nasty bacteria that have made her lungs their home.

I was a bit nervous about the line being inserted – since it is done under general anaesthetic (GA), which can be an issue for kids with respiratory problems, not to mention Miss Z was in the process of recovering from influenza, during which she’d spent several days on oxygen.

In the end, however, it was a non-issue. They decided to ‘twilight’ her rather than use a full GA and the procedure took approximately the same amount of time it took me to walk from the operating theatre to Subway, buy a sandwich and return to Miss Z’s hospital room to eat it.

And so we began the 2-week course of antibiotics. I had insisted that the course was done from home (we both would have gone mad, stuck in the hospital for two full weeks) and so we were sleeping in our own beds the night after the procedure. Miss Z’s PICC line, antibiotics and chest physiotherapy were managed by the fabulous Hospital in the Home (HITH) service, that sent a nurse and a physio to us every day. The nurse checked the line, did daily obs (temperature, heart rate, respiratory rate) and gave Miss Z her antibiotics. The physio did chest physio twice a day (basically pounding on her chest to loosen up the goo, encouraging her to cough and then sucking it out of her nose and mouth as well as monitoring her SATs (blood oxygen levels) and tracking if the antibiotics were improving her chest.

I have a huge amount of gratitude to the nurses and physios who have visited us over the past two weeks. Every single one of them was friendly, supportive, professional and kind to Miss Z. And they all reminded me that I had a 24-hour number to call if I had any concerns at all.

Care in the home made such a difference to Miss Z. To say she hates the hospital is an understatatement. And you can’t blame her – she associates it with unpleasant experiences for a very good reason. I don’t think I’ve yet recovered from the time it took three nurses and me to hold her down while an Emergency doctor tried repeatedly to get a cannula in her as she screamed at the top of her lungs. Or how they used to have to wrap her in a sheet and hold her down in order to get her naso-gastric tube reinserted after she had pulled it out. If I haven’t recovered from those incidents, how do you think she feels when she finds herself back in the hospital?

In comparison, Miss Z was all smiles for the HITH nurses. She was often so busy wiggling and singing and chatting that the nurses struggled to take all her readings. The PICC line worked beautifully and didn’t cause her any discomfort – in fact, when it wasn’t in use and was wrapped up against her arm, I don’t even think she noticed it.

The physios had a harder time of it. Miss Z loves the percussions and vibrations part, but is not a fan of suction (can’t really blame her) and being forced to cough up big globs of phlegm isn’t her idea of a good time. That said, I think she secretly found one physio hilarious (particularly her routine about nose picking, which she deployed right before sucking the snot out of Z’s nose), but wasn’t going to give her the satisfaction of a smile…

Our 14 days of antibiotics finished on Wednesday. And I’m hopeful that they have given Miss Z a boost. She isn’t coughing as much and is a much happier little girl than she has been in recent weeks (then again, she did have the flu…). Today we visited the Respiratory doctor, who was happy with her progress. And then the nurse arrived and pulled out the PICC. And I really do mean, pulled it out – nothing more sophisticated than that! I’ve seen a lot of medical procedures, but this one made me ever so slightly queasy – probably because the line was really long, so she kept pulling, and pulling. I think it bothered me more than Miss Z, who only got irritated when the nurse applied pressure to the hole in her arm (because it was an actual hole) for a minute  afterwards to stop the bleeding.

So, Miss Z is now PICC-less and the waiting begins. Z’s doctors hope that this will keep her good (as in clear of chest infections) through the summer. After nearly a year of constant chest infections, I’m almost scared to hope for that much… but wouldn’t it be lovely for her to have a break from the coughing, the sleepless nights, the vomiting, and the constant visits to the hospital.

The plan is to wait and see how she goes. I’m keeping my fingers crossed.

Gratification of the senses

I ran across this TED talk on Facebook a few days ago and it has stuck in my mind ever since.

I think what really resonated with me was the part about aesthetic gratification, that at the end of life people find pleasure with simple stimulation of the senses – the smell of baking cookies, the feel of a dog resting its head against your leg, the sensation of inhaling a French cigarette.

This made me think of Miss Z because aesthetic gratification is the way she enjoys the world and the way we enjoy her – those simple sensory pleasures associated with Z.

The feel of Miss Z’s head resting against me as she sleeps.

The rare smile that lights up her eyes and lets you know that she is truly happy. Or the evil glare she gives you when you do something she doesn’t like.

The smell of her clean hair after a bath.

The warm, happy, fulfilled feeling when I see Miss Z and her sister snuggled up together.

The contentment when Miss Z is healthy and happy and just being part of the family.

Even the tingle of dread that comes with the smell of a stinky, dirty nappy.

And equally importantly, it is moments of aesthetic gratification are what make Miss Z happy.

She loves to feel textures against her lips and face – especially smooth, cool satin and the rough terrycloth of a towel.

She loves the full-body pressure and security of a big cuddle and being held as she falls asleep.

The simple act of holding her hand can calm and soothe her.

I’m sure the smell of her bedroom – the laundry detergent from the freshly washed sheets laced with a hint of dog – reassures her that she is home.

And the sound of Music for Dreaming lets her know that it is time to relax and sleep.

The warmth of the heat lamps in the bathroom and the sound of Katy Perry and her other favourite singers means it is her favourite part of the day – bath time!

A new girl

Its been a few hard weeks. And by that, I mean really, really hard. We had a meeting with Miss Z’s paediatrician to discuss Miss Z’s life limiting condition and where will want to draw the line on medical intervention. Miss Z’s new carer didn’t meet expectations and we let her go after only a week. And we’ve all been sick – even Vegemite, who is never unwell. And then, Miss Z – who initially appeared to have a gastro bug – got worse and ended up in hospital. It was a pretty scary week during which she became non-responsive even to pain, no one really knew what was making her so ill and at one point it was thought that she might have an infection of her brain.

Fortunately, after three days of IV antibiotics, she started to wake up and after seven days she was allowed to go home.

And then something wonderful happened. She REALLY woke up.

We’ve never seen Miss Z so awake and aware and interactive. She looks at you when you speak to her – really looks at you. She smiles – a lot. She intently watches what is going on around her. And maybe, just possibly, we have finally heard her laugh (at her sister, no surprise there).

And perhaps my favourite part of all – she now pouts when she is unhappy. It is  the cutest little pout I’ve ever seen. Not that she’s happy when I laugh at her instead of taking her unhappiness seriously.

How can you not laugh when you see this face?!

How can you not laugh when you see this face?!

We have no idea what has made her so much more responsive to the world around her. And we have no idea if it is going to last, or if she will eventually slide back into having good and bad days, but mostly just middling along. Already, I worry that she’s sleeping more and interacting less. But I’m not going to let myself worry about what is to come – Miss Z always surprises us on that count. Instead, we are all trying to sit back, take a deep breath, and enjoy the little girl that we have right now. Because she is amazing.

Determined not to wake up in the morning, no matter what.

Determined not to wake up in the morning, no matter what.

...and then she discovers that Doc McStuffins is on tv...

…and then she discovers that Doc McStuffins is on tv…

Feeling much better after watching 'the Doc'

Feeling much better after watching ‘the Doc’