No simple answers

After months of sleepless nights, grumpy days and repeat trips to the Emergency Department, we finally came to something of a turning point – although it was very nearly a breaking point – with Miss Z’s mystery illness.

During the course of February and March, we were in the Emergency Department six times in six weeks: twice because I believed something wasn’t right; twice because she had seizures at school that required emergency medications (one lasted 25 minutes, the other 10+); once because she was in respiratory distress (and was admitted for 3 days); and then our final visit when she was showing all sorts of strange symptoms (and was admitted for 6 days).

By the end – at our last visit to Emergency – I think we were both at our breaking point. Something was clearly not right – Miss Z had been on 4 weeks of antibiotics by that point and shown no sign of improvement. I’d been in Emergency the week before – at the recommendation of our GP – and had been sent home after they couldn’t find anything obviously wrong with her. The doctor had told me (intending to be reassuring) during that visit that I could always bring Miss Z back if I had any concerns, which made me want to weep since I’d already spent so much time waiting in Emergency and not getting any answers.

Miss Z’s fourth birthday seemed to be the turning point. She had a seizure in the morning and screamed for hours afterward before falling asleep. When she woke, she was miserable, was holding herself very rigidly and didn’t seem to want cuddles from anyone. And she didn’t have a wet nappy all day, despite having her feeds as usual. Although she did wee on her towel after her bath that evening, she woke up the next morning with a dry nappy and I was concerned.

But I was also worried that no one would listen if I returned to Emergency yet again.

I vaguely remembered that urine retention was one of the (many) side effects of her anti-seizure medication, so I phoned the Neurology Nurse instead. She recommended I take Miss Z to Emergency to be checked out. So I did.

The trip turned into a bit of a comedy of errors at that point – although there was nothing much comedic about it.

When we arrived, Miss Z was fast asleep in her pram and no one seemed overly concerned. We were told that Emergency was very busy and we’d have to wait in the waiting room to get a bed. So we waited, and waited, and waited.

When Miss Z was finally given a bed, it turned out to be in the low priority area of Emergency. At the new hospital, the Emergency Department is divided into four zones: red for urgent (‘resus’), green for serious or complex – probably requiring admission, blue for quick procedures, and purple for non-urgent and low priority.

Now, call me a hospital snob, but Miss Z is always sent to the green zone (unless she’s red, which has happened a few times recently, although both times she was sent to green after a bit of active monitoring). She is complex and difficult to diagnose and despite my regular appearances in Emergency lately, I’m not prone to taking her to Emergency for issues that I can manage myself (her GP and I managed her first bout of pneumonia at home just fine, thank you).

At any rate, I won’t bore you with all the tedious details of the next 48 hours, but suffice to say they included:

  • A long, long wait to find a bladder ultrasound machine – apparently Queensland’s premier children’s hospital only has one?!
  • Multiple failed attempts to insert a catheter to obtain a urine sample.
  • Concern that Miss Z might have another fracture – followed by a junior doctor’s decision to x-ray only one leg (yes, just one, even though no one was certain which leg was causing her pain).
  • Miss Z screaming in pain for what seemed like hours in Emergency. Even a dose of Oxycodone didn’t help.
  • A total of 12 hours in Emergency before they found us a bed on a ward.
  • Arriving on the ward to discover that since Emergency had failed to put a SATS probe on Miss Z, they had missed that her levels were low and that she required oxygen (nothing dramatic, but still…)
  • An encounter with the on-call paediatrician who insisted that although the antibiotic Miss Z had taken for four weeks hadn’t worked, we should still keep her on it for another two weeks.
  • The same paediatrican telling me he wanted to know my opinion – and then talking over me every time I opened my mouth.
  • Inexplicably being given a ‘low priority’ rating to get her other leg x-rayed, which meant another day of waiting.

So, as day three dawned, Miss Z and I were seriously unhappy. She was still in pain and we were no closer to figuring out what was causing any of it, let alone doing anything about it. Fortunately, at that point an awesome nurse supervisor of the ward stepped in and helped me to get things happening.

It was discovered that Miss Z had, in fact, a bacterial chest infection called Pseudomonas that was resistant to the antibiotic she had been on for the past four weeks.

There was also concern that her increasing reflux was most likely being aspirated into her lungs, which was making her more susceptible to infections.

And we finally got to see the Respiratory Team – twice.

The best part was that Respiratory and Paediatrics worked together to come up with a plan. A plan! I was beside myself with joy…

At this point, I wish I could say that we followed the plan, Miss Z immediately became better and we all lived happily ever after, but of course with Miss Z, there are no simple answers.

The plan involves four weeks of very intensive treatment for Miss Z. She is on two antibiotics to treat the Pseudomonas – one given through her PEG and the other through a nebuliser. In addition, she has a Ventalin nebuliser (to open her airways) and a hypotonic saline nebuliser (to clear out the goo) – and since they are all given to her twice a day, that brings her to a total of six nebulisers each day. Plus chest physio and suctioning (also twice a day). And did I mention that the antibiotic given by PEG (twice a day) can’t be given within two hours of food (before or after) and can’t be given within four hours of her calcium supplement?

Honestly, I have never been so grateful for my au pair. I wouldn’t be able to get out of my pajamas, let alone out of the house, without her help – Miss Z’s treatment routine is just too full-on.

According to the plan, we will be seen by the Respiratory Team at the end of four weeks, at which point they will decide what comes next. Of course we don’t yet have an appointment scheduled, so I’m not sure what to do if we run out of antibiotics but still don’t have an appointment… Wait, I suppose.

Miss Z has also been referred to the gastro surgical team for a fundoplication. This is a procedure where they wrap the top of the stomach around the oesophagus to prevent the stomach contents from coming back up. The idea is that if Miss Z isn’t able to vomit (or at least not as much), then she won’t be able to aspirate her vomit, which will hopefully make her lungs healthier and stop these chest infections. It might also make her happier, as it will stop the pain from her reflux.

It is a pretty serious surgery – although I was relieved to discover that my initial online research was wrong and the procedure is now mainly done by keyhole surgery. Still, it will probably herald the end of any hope that Miss Z will ever eat again – apart from perhaps a few tastes.

But nothing is simple and a fundo isn’t going to be a solution – just part of one. Miss Z’s secretions – the saliva and phlegm most of us swallow without even realising it, but for her sits in the back of her throat or upper respiratory tract – are a problem with no solution. Apart from diligent chest physio and regular suctioning. Those two things appear to be now added permanently to our ‘new normal’.

And the cause of Miss Z’s excruciating pain in the Emergency Department was never explained. We finally got an x-ray of both legs and her pelvis and there is no fracture. Nor does she have a urinary tract infection. After a few days in hospital, she stopped holding her legs stiffly and crying when she was moved. That mystery is just going to have to remain unsolved.

Despite everything, Miss Z still isn’t back to her old self. She cries – a lot. She wakes at night – a lot. She still needs pain relief – a lot – although I’ve got no idea what exactly hurts. She is coughing and vomiting a lot, too.  I hope it is a sign that she’s on the mend and is clearing all the goo that has been stuck on her chest, but I’m not certain. Yesterday, she had a great day where she managed a full day at school and came home in a cheerful, happy mood (at least until she had to have her evening nebulisers). But today, she screamed and cried inconsolably all morning until we gave her Oxycodone – after which she has been mostly sleeping.

There are never simple answers with Miss Z. But after the past four months, I really wish there could be. I don’t want the unwell, unhappy Z to be our new normal.

So totally over her nebulisers...

So totally over her nebulisers…

The big 4

At the end of March a big thing happened: Lil Z turned four years old. FOUR!

In true Z fashion, she had a seizure in the morning and was miserable for most of the rest of the day. But she still turned four.

I remember when Vegemite turned four – I was devastated. I think there is something about four years old that definitively signals the end of being a baby or toddler. Four is a child’s age. You can’t even really call a 4-year-old a ‘preschooler’ since so many kids (Vegemite included) start school when they are still four. I didn’t want Vegemite to grow up and she still remembers me forbidding her to ever get any older than four. We still joke on her birthdays that she’s just celebrating being four again…

I was a bit more circumspect when Lil Z turned four. But I’ve been surprised how much it has affected my view of her. She really and truly is no longer my baby. She is a little girl.  She may not be doing even a fraction of the things that Vegemite was able to do at four, but she has always had a different path in life. And I am hopeful that this year will be full of big changes and events for her.

The first, and hopefully biggest, is what I am calling the COMMUNICATION REVOLUTION. Up until now we have focused mainly on sign language with Lil Z. She has grasped – and lost – a few signs over the years and understands several more. But sign language is never going to be her primary mode of communication because she has such limited use of her hands.

So, for her birthday, she got an iPad. And on Monday, her Speechie is coming over to help me set up a few starter communication apps for her. And on Wednesday I am going to an introductory course on Proloquo2go (an augmentive and alternative communication (AAC) application that we are going to try using).   This is such an exciting and totally HUGE thing that I’m not going to go into it too much now – I’ll save it for another post.

And second, is that before she turns five, Lil Z will be starting school on a full-time basis. This past term has been a bit of a disaster since she’s been so unwell and twice the school had to call an ambulance because she had a seizure that required emergency medication. But I am hopeful that we are finally getting on top of some of her health issues (again, I’ll update you in another post) and that this term will be better for her. And that by term 3, we can increase her attendence to 2 days per week. And in the next school year (beginning in January 2016), she will be ready to start Prep (the first year of school in Australia), just like all the other kids her age. This will be a big step for a little girl who is used to spending the majority of her time at home, receiving one-on-one attention. But I think she will be ready for the challenge.

Lil Z turning four has also made me start worrying about if I’ve done enough for her in the early years. After all, everything you read emphasizes just how important early intervention is for kids like Lil Z. What if I didn’t put in enough effort? Maybe I shouldn’t have worked and instead dedicated myself to working with her. Maybe I should have pushed her carers harder to do more therapy with her. Maybe I should have found more private therapists or tried more types of therapy. Her early intervention days are nearly at an end – what if I’ve screwed them up and can never get back that window of opportunity?

Some of that fear also comes from the fact that at four, Lil Z is not sitting or standing or walking. And I wonder: is this it? Is this as far as she is going to progress physically? I’m certainly not resigned to it – I still have big goals I’d like her to reach, including to start using a walker – but if she isn’t sitting by four, is it realistic to expect her to do it, ever?

And that also leads to my big worry of the moment – dealing with Lil Z the girl, not Lil Z the baby. We still treat her like a baby in that we lift and carry her. Her only two big pieces of equipment are her special needs pram (which can convert into indoor supportive seating) and her adjustable bed. But my back is suddenly telling me that the time of lifting and carrying is coming to an end. And to be perfectly honest, right now I can’t picture or understand how we will cope in the future. And that worries me, because without a vision, we’re just going to keep plodding along, struggling to lift and carry her, and falling apart ourselves.

So, four is an age of change – some good and some not so good. Change is always scary, but I’m hopeful that this will be a good, positive year for Lil Z and for all of us.

But the last – and no less important – change now that Lil Z is four will be felt most keenly on this blog.  I’ve decided that “Lil Z” is no longer the right name for her. She’s never been ‘lil’ and in fact is well above average in height with long, long, long legs. And now that she’s four, she’s not ‘lil’ in age either. So, from now on, she will be referred to as Miss Z or just Z.

As much as I want to, I can’t keep my girls little forever. And at four, it is time to remember that Z is growing up.

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Miss Z – a few hours old

One year old

One year old

Two years old

Two years old

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Three years old

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Four years old

Going purple

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OK, I’ll admit it. I’m procrastinating. I have 30+  purple ribbons to cut and pin for Vegemite’s talk tomorrow, and haven’t yet got the motivation to get started.

Why is Vegemite taking purple ribbons to school tomorrow? Because 26 March is Purple Day – the international day for epilepsy awareness. And Vegemite understands the impact that epilepsy can have and, I’m proud to say, is committed to raising awareness. Last year she took Gracie, her epilepsy awareness bear (thank you Epilepsy Action Australia!), to class to talk about epilepsy.

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This year, she has put a huge effort into her presentation – writing out what she wants to say, providing a number of illustrations, and practicing her talk endlessly on both QB and me. The ribbons will be given to everyone in her class at the end of the talk – along with purple balloons that her teacher is providing – as a reminder of the importance of Purple Day.

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IMG_5605_1024And it is important. According to the Epilepsy Foundation, around 65 million people worldwide have epilepsy. And around one-third of those with epilepsy have uncontrolled seizures, where no current medication or treatment works to prevent their seizures. Epilepsy can be fatal, with SUDEP (sudden unexpected death in epilepsy) and status epilepticus (prolonged seizures) the most common causes. Raising awareness of epilepsy can secure better funding for research, improve care and treatment, and remove the stigma of epilepsy.

Lil Z has uncontrolled seizures. She is currently on three anti-epileptic medications: Epilim, Keppra and Topamax. She’s previously been on Tegratol and Trileptal as well. All seizure medications come with a raft of side-effects, ranging from drowsiness, nausea and weight gain or loss to liver failure, hearing or vision loss and kidney stones. It can also affect a person’s behaviour, causing anxiety, aggression or lack of concentration. Anti-epileptic medication is not something you go into lightly – it is often choosing the lesser of two evils.

When Lil Z is going through a ‘good patch’ her seizures can be controlled for up to a month at a time. However, when she hits a growth spurt or is unwell (like now), she will have seizures nearly every day. Her seizures are totally unpredictable – she has them at all times of the day and without warning – although she often gets upset and anxious shortly before the seizure occurs and most (but not all) of her seizures coincide with her waking or falling asleep.

Her ‘usual seizure’ lasts for around 2-3 minutes and involves her going extremely rigid – both arms are extended out in front of her while her left leg bends up to her chest and her right leg extends. Her head turns sharply to the left and her eyes are fixed. She often vomits when coming out of a seizure and if her seizure goes for more than 5 minutes we have Midazolam, her ‘rescue med’, that often (but not always) stops the seizure.

Sleeping off Midaz after a seizure

Sleeping off Midaz after a seizure

Lil Z has had status epilepticus on a number of occasions, during which her seizures have lasted for over an hour and required strong drugs to stop the seizure. She has also had cluster seizures, where she has had repeated seizures for an hour or more.

As a big sister, Vegemite has seen more seizures than most people do in their lifetime. She knows what to do (make sure Lil Z is safe and roll her onto her side so she doesn’t choke on her vomit). She holds Lil Z’s hand and speaks softly to her while she’s seizing. And on a number of occasions, she has accompanied Lil Z and me to the hospital in the ambulance.

Vegemite's illustration of a brain having a seizure

Vegemite’s illustration of a brain having a seizure

So, Purple Day is important, not just for Lil Z, but for Vegemite as well. And I am very proud that she is willing to share her experiences with her class.

To learn more about Purple Day, epilepsy and how you can help, you can see:  www.purpleday.org or check out your local epilepsy organisation.

purple day

Yes, but what do YOU think?

I ran across this video the other day and to be honest, I’m not sure what I think of it:

I get the point they’re trying to make and I agree… but I also know that imitating a child with special needs is a time-(dis)honoured way of making fun of them, of mocking them.

Vegemite imitates Lil Z all the time and it doesn’t bother me, because it’s her sister and she is simply doing it to copy her, not with any malice. In fact, I’ve noticed that Lil Z sometimes watches Vegemite with interest when she does it.

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But I don’t think I’d like it if someone else imitated Lil Z.

Maybe this is because I don’t think many people really understand Lil Z or her actions.

One time I was leaving Vegemite’s school when one of the other mothers said, “oh, look at Lil Z – I think she’s trying to get out of the stroller herself!” In fact, Lil Z was having a tonic seizure and I was heading double-quick time to the car to be able to deal with it.

Often, people are alarmed by Lil Z’s squeals and shrieks, worried that it is a sign she’s unhappy. On the contrary, that is what she does when she’s happy. Put on some Katy Perry and she’ll squeal along to the music.

Yesterday, Lil Z had a long seizure at school and had to be taken to the hospital by ambulance. I arrived at the school in time to climb in the ambulance with her. The paramedic repeatedly told me how she was glad I was there because she didn’t know Lil Z and couldn’t tell what was and wasn’t a seizure. It’s a fair point, since someone who isn’t familiar with her could take her jerky movements or periods of quiet reflection as seizures.

I know Lil Z better than anyone. I’ve been to more doctor’s appointments and therapy sessions than I can count. I have ridden in the back of an ambulance with her more times than I can remember. I can recite her medical history in my sleep. I carry a list of her meds and their dosage and strength in my purse. I am the link between Lil Z’s medical team, carers, school, therapists and family – the one who at least tries to make sure that everyone is on the same page.

And therefore, I expect Lil Z’s medical specialists to consult me. And they do. Which is great. Only once have I encountered a doctor who had no interest in Lil Z’s background or abilities, and simply told me what would be done. I’m very happy that we haven’t seen him again.

But sometimes, I feel that perhaps medical staff are relying too much on me. After all, I may be a specialist in Lil Z, but I’m not a specialist in gastroenterology or neurology or orthopaedic surgery. My knowledge on these subjects and more comes from a combination of Google, Facebook parent forums, and the occasional discussion with a doctor. I’m hoping most specialists we see have a bit more formal training than that…

Lil Z is going through a bad patch at the moment. Her reflux has worsened considerably. Her seizures have increased in frequency and duration. She wakes frequently during the night coughing, bringing up big globs of thick, foamy phlegm. She is sleepy during the day and some days she is so unsettled that she does little except cry.

I’ve tried everything to figure out what is wrong with no success. And I’ve asked multiple doctors and specialists, again with no success. Lil Z has had all sorts of tests run, but nothing has come back with even a clue about what might be wrong.

In the past month, we’ve been in the Emergency Department four times: twice for seizures, once for respiratory distress and once for general unwellness. We have also been admitted for 3 days (following the respiratory distress) in the past month. I am exhausted and at the end of my tether.

These trips to Emergency – along with her regular appointments with doctors and specialists – are focused on me as much as they are on Lil Z. Doctors question me not only on her medical history, but also how I think she’s responded to different drugs, the number of times she has vomited / seized / wheezed, and my general observations on her health. I worry constantly that I will forget details or not describe something properly and it will cause the doctor to miss an important clue about what is wrong with Lil Z. I know that if it was QB instead of me talking to the doctor, the conversation might be totally different. Not because QB and I disagree on Lil Z’s health, but that we notice different things and give different symptoms greater or lesser importance.

Our first trip to Emergency this month was because I believed there was something wrong with Lil Z (I actually expected they would find that her pneumonia had returned). They ran every test imaginable, none of which showed anything wrong. As the day wore on and I sat, cold and hungry, at the bedside of a little girl who after days of crying seemed content to sleep peacefully, and I questioned that anything was wrong. Maybe I’d imagined it. After all, the doctors couldn’t find anything and Lil Z seemed OK… By the time we’d had our last consult, I was riddled with self-doubt, exhausted and ready to go home. But really I wished that someone would tell me what I should do with Lil Z.

Yesterday at the hospital, the neurologist suggested that perhaps Lil Z wasn’t getting the full effect of her anti-seizure medication because she was vomiting the drugs back up. I told her that I’d had a discussion with her paediatrician about her reflux and vomiting. He suggested that the next step in the process would be surgical – either a fundoplication or a gastrojejunostomy (GJ) tube. The fundo is a procedure where they wrap her stomach around her esophagus to strengthen the lower esophageal sphincter in order to stop vomit and acid from coming back up as easily whereas the GJ is a feeding tube that is inserted into the small intestine, rather than the stomach, which again reduces the chance of her formula coming back up.

Both require surgery and while they could improve her quality of life, they will also add some restrictions. A fundo will make it highly unlikely Lil Z will ever return to eating orally whereas feeds need to be run continuously with a GJ, which means she’ll be constantly connected to a feed pump.

The doctor asked me what I thought and I said I wanted to wait until our next appointment to decide if we should go down that route. I hadn’t gotten my head around surgery, wanted to hear about others’ experience with the two procedures, and I wanted to give Lil Z a chance to recover from whatever infection or virus has been plaguing her to see if her reflux improved.

Now, a month on, I’m not sure I made the right choice. But I simply don’t know enough about it. How many vomits a day is “too many” and how many are in the category of “just live with it”? How long should she have a lingering cough before we decide she’s apirating? I’d like the specialists to tell me what to do, rather than asking me what I want to do. I know Lil Z, I don’t know gastro.

There was a similar experience last week when I took Lil Z to the Spinal Clinic. The doctor looked at the x-rays and said that the brace was correcting her curve, but that when she wasn’t in her brace, her curve was probably worsening. I was happy that the brace was working (I would have been very angry if I’d been strapping Lil Z into it for the past 6+ months for nothing). Then he asked what I thought about a spinal fusion. Confused, I said I thought the objective of the brace was to delay spinal surgery for as long as possible – at least until she stops growing. He said yes, but then commented that they would be relying on my feedback as to when we should start considering surgery. Huh? Surely as the specialists they are the ones who should determine when surgery is necessary. I know Lil Z, I don’t know ortho.

So, I get it. I know that Lil Z’s doctors are going to defer to me because I know her best. But that doesn’t mean they can’t make recommendations. I may know Lil Z’s medical history, but that doesn’t mean I know what is medically best for her.

And boy could I use some medical recommendations now. I am out of ideas, out of energy and living with the constant thrum of anxiety about Lil Z. I know her best. I know there is something not right. But I just don’t know what to do about it.

Setting the date

IMG_5510 2We are a family that live by the calendar. There may be only four of us… five counting the au pair… and well, six if you include Ben, who has his own share of schedule-able events… but we seem to spend our lives going in different directions. I’ve tried keeping track of all our appointments, lessons, sessions, classes and other responsibilities in a range of ways, but what works best for me is a good old-fashioned calendar. If it isn’t written on the calendar, then it doesn’t exist.

The calendar records all of Lil Z’s therapy sessions and medical appointments – there are a lot of them, all at varying times, so there is no way that I could remember them all any other way.

All her therapists book her sessions by the ‘term’ (which coincides pretty much with school terms). Before the term begins, the therapists have a chat with me about the best days and times for Lil Z’s appointments. Then, we receive a list of appointment dates and times. I can record them all on the calendar at once and we can schedule around them. It makes life easy.

If only medical appointments were that easy.

Apart from her GP, all of Lil Z’s doctors and specialists are based at the new Lady Cilento Children’s Hospital here in Brisbane. The new hospital isn’t nearly as convenient or as close for us as the old Royal Children’s Hospital, but as I know people who have to fly to Brisbane to see specialists at the hospital, I won’t complain about the extra 10-15 minutes it takes me to drive across the city…

I also won’t launch into a rant about all the things that are wrong with the new children’s hospital. It is new and they are still ‘de-snagging’ all the little problems, so it isn’t really fair to complain… yet.

However, I will complain about our appointments because at the moment, they dominate our lives. Last week we saw the paediatrician. This week we saw the dietician. Next week we see the Neurologist on Wednesday and the Orthopedic Spinal Clinic on Thursday.

There is no coordination between departments to try to get two appointments on the same day. And there is NO flexibility on the day or the time. If you can’t make your assigned appointment, then you go to the back of the list and usually have to wait another 3-4 months for a new date. This isn’t so bad for things such as Lil Z’s annual ophthalmology appointment, where they are just monitoring the health of her eyes, but it is a big deal for other appointments, where they will be following up on medical issues and adjusting medications.

So, hospital appointments take precedence over everything else, which is fine because they are important. But then the timing catches us out. Several of Lil Z’s recent appointments have been at 8.30am – the same time I’m meant to be dropping her big sister off at school. And, incidentally, the same time the roads between our house and the hospital are solidly packed for the morning rush hour. And next week, the Ortho appointment is at 3pm, which is when I’m meant to be picking Vegemite up from school. Not particularly convenient scheduling.

So, I have to pay to put Vegemite into before or after-school care on those days. Yes, I’m lucky enough to have an au pair, but we only have one car, so even an extra set of hands doesn’t help…

And while we’re talking about paying, lets talk about the cost of parking at the hospital. We had a relatively swift appointment with the dietician today and were only at the hospital for an hour. Parking cost $17. It is usually even higher than that because none of the others run on time, so we are always at the hospital for a minimum of two hours. According to my rough calculations, by the end of next week, I will have spent $350 so far this year, simply in dealing with the logistics of getting Lil Z to and from hospital appointments.

At the end of the day, none of this really matters because we want the best care possible for Lil Z, and if that inconveniences us, then it is a small price to pay. But at the same time, it can be hugely disruptive for our family. It means that Vegemite gets juggled around. It means I lose yet more time off work. I’m not sure I would be able to cope with missing so much if I wasn’t self-employed, but being self-employed means that if I’m at the hospital, I’m not working and therefore not getting paid. And it means we’re spending money on parking, out-of-hours school care, and taxis, which could be better spent on equipment and therapy for Lil Z.

It’s frustrating because it seems like there really should be a better way. I know that most of the people using the children’s hospital aren’t there as frequently as we are. I know that if everyone got a say in scheduling their appointment, it would be chaos. But surely there is a better way to make it easier for kids like Lil Z with complex medical needs. Surely that can be taken into consideration?

It would certainly make my life easier. And my calendar tidier.