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…

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