The cat takes over – an occasional series

Dealing with fractures and seizures and chest infections can get you down. So, I thought I’d inject a bit of levity with a post about the member of our family who is all but forgotten on this blog, but who tries very, very hard to be included – especially when there is special needs equipment about. I’m speaking of our cat, Juno.

I sometimes think that being the fogotten one, perhaps Juno is trying to take the place of Miss Z in family life. But then again, perhaps she’s just strange. After all, when she was a kitten, she liked to sleep in desk drawers…

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I don’t care if you need a ruler, close the drawer and let me sleep!

 

Juno moved to Australia with us from London and has assimilated to the Aussie lifestyle exceedingly well. She has learned that she can’t climb a tree as well as a possum and that geckos are fun to catch, particularly as their tails fall off when they get scared, but aren’t so good to eat. However, she still doesn’t understand why we weren’t more gracious when she brought us a live snake as a gift – twice. (no photos of that – I was too busy panicking at the time).

Although when Vegemite was a baby, Juno often tried to sleep in her pram, that was really as far as it went. However, with the arrival of Miss Z, Juno suddenly realised that babies were good for something – providing her with new places for naps. One of her favourite locations was Miss Z’s bouncy chair – although Miss Z loved it with a passion as well, so Juno had to act fast if she ever wanted a nap there.

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Get out of here unicorn, this is MY bouncy chair.

 

Once she realised that the high chair usually came with a free coating of pureed food, she was right there, too.

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What’s for dinner tonight?

 

And Juno was probably the only one who didn’t feel sad when special needs equipment began arriving at our house. Instead of seeing it as signs of limitation, Juno chose to view it as the expansion of opportunity… for naps.

With this attitude, she swiftly embraced the Jenx Giraffe chair,

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The lateral supports make a nice place to rest my head.

 

and the Seat 2 Go,

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This seat gives me so much room to move, I can even lick my toes…

 

and the Child Rite seat.

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It makes me sit up nice and straight, too.

 

It was also nice of those people at Epilepsy Action Australia to send her that comfortable ‘epilepsy teddy bear’ – it comes in useful for naps on the bed.

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Who needs stuffed animals when you have me?

 

But in her opinion, by far the best thing we have purchased for her/Miss Z were beanbags. At first, she wasn’t so happy, because we only had one, which meant sometimes she had to share…

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When is this human going to get off my beanbag?

But eventually we humans realised the error of our way and bought her one of her own, so she and Miss Z could watch ‘Sofia the First’ in comfort.

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Hmm, now if I can just get her blanket, too…

 

 

Ben has tried to join in the fun by using Miss Z’s wedge pillow, but dogs just can’t carry off the attitude.

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This isn’t as comfortable as it looks…

 

Sadly, it appears that the big loser in all of this is poor Vegemite. She has been relegated to the dog bed on the deck.

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Vegemite in her new bed.

It’s tough being a sibling. Though that’s nothing compared to having Juno in your family.

 

 

 

 

 

A different kind of Mother’s Day

IMG_5078My day started off like so many others’ around the world yesterday – with breakfast in bed. Made by a 7-year-old that included rather limp and violently buttered toast, a heaping bowl of cereal and biscuits. Vegemite then climbed into bed with me and had breakfast too.

But after that, my day was quite a different kind of Mother’s Day. I did a full day children’s first aid and CPR class.

Now, it sounds very worthy of me, but let me assure you it is not. I had no idea that the date was Mother’s Day when I registered – it was just a free date on the calendar. And I whinged about it to QB when I did find out. So, this wasn’t exactly a self-sacrificing move on my part.

At the same time, I am so pleased that I did it. Although it wasn’t particularly fun to spend my day hearing about all the ways my children can come to harm (the ‘bites and stings’ session alone made me reconsider the wisdom of living in Australia), it was empowering to learn what to do when the worst does happen.

Doing a first aid course – that included CPR for children training – has been on my ‘to do’ list for a long time. Miss Z’s neurologist recommended I get trained some time ago, so frankly it is a bit shameful that it has taken me so long. But Miss Z’s recent respiratory issues finally kicked me into gear. After all, the only thing potentially more awful than having to do CPR on your child is to have your child stop breathing and not knowing how to do it.

Miss Z has stopped breathing – or had difficulty breathing – a few times during seizures, although fortunately all the severe instances happened when we were already in the hospital. But there is no guarantee that is where we’ll be in the future. So, I learned what to do.

And not just that. A lot of the other first aid advice was also useful – including how to immobilize a fracture, how to respond when your child has burned herself or chopped off a finger (do not put it on ice – makes it hard to sew back on – just keep it cool), not to mention what to do when your child is bitten by a snake (argh!).

It was also interesting to take a first aid class now, after four years of looking after Miss Z.  Before Miss Z, I didn’t think I could cope with anything medical. In an ironic foreshadowing of things to come, I remember reading about fever convulsions in a baby health book before Vegemite was born and declaring I would “SIMPLY DIE” if anything like that ever happened to my baby. Fast forward a few years, and I’ve lost count of how many seizures I’ve managed with Miss Z.

When Vegemite was around 6 months old, I picked her up from her pram in the kitchen and accidentally knocked her head on a cupboard. Vegemite screamed, I panicked and we were eventually taken to hospital by ambulance. Vegemite was smiling when we arrived and the doctor was unable to find any sort of mark where her head was bumped. But I was shaken – and embarrassed – by the experience. Again, fast forward a few years, and I am used to calling an ambulance, reciting Miss Z’s medical history and current symptoms over the phone and to the paramedics and the doctors at the hospital. Although I may be worried, there is no more panicked hysteria.

In the past four years, I have learned to do so many things that I never thought I’d be able to cope with – replacing feeding tubes, nasal suctioning,  seizures, nebulizers, and managing a vast array of medicines. And it made me more confident about my abilities in the first aid course. Practicing CPR on various sized dummies on Mother’s Day, I knew that I never wanted to be in that situation with another person, but that if I was, I’d cope and I would do the best I could.

And that little confidence boost was a nice Mother’s Day present in itself.

More of me…

This isn’t a proper post as such, but more a bit of narcissistic self-publicity. I haven’t had much sleep lately, so you must forgive me…

However, I have recently also been blogging over at the wonderful Firefly Garden.  Firefly (the makers of the Upsee and other useful equipment for kids with special needs) have recently set up an online community for parents (and grandparents, friends, relatives or anyone else) of children with special needs. It is a lovely online resource and well worth checking out. Oh, and the blogging is pretty good, too. The posts I write for them don’t appear on my blog, so if you want more of me, this is your chance!

Check them out here.

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You might have also noticed the Top Mommy Blog badge on my front page. What you might not have realised is that if you click on it, you cast a vote for my blog, which moves me up on the Top Mommy Blog website rankings… which is kinda cool. If you fancy giving it a go, you can click here to cast a vote for my blog.

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So, if you really feel like you’re just not getting enough of me – here’s your chance for more! Happy reading…

Going backward

Now that Miss Z is four, I think some realities are starting to set in for me. I am having to come to terms with the fact that a lot of what I had wanted Miss Z to achieve in her ‘early years’ has not happened. In fact, almost none of it has.

My hopes and aspirations to get her sitting independently, interacting more with the world around her, using sign language consistently, beginning to use a walker to move around, bonding with her puppy Ben – none of that has happened.

If anything, we’ve gone backwards. Where once she ate purees (and even a whole pancake on that fateful Shrove Tuesday), she now rarely swallows food that is put in her mouth. Where once she could prop on her elbows and roll all the way over (in fact, she would roll from one end of the room to the other like a little log), she now is no longer to prop or roll over, and struggles to even roll from her back to her side.

Much of the lack of progress can be blamed on the constant need to deal with medical issues. We’ve lurched from one crisis to the next for the past four years: 2012 was the year of feeding problems, 2013 was urinary tract infections, 2014 was fractures and 2015 has been chest infections (and now another fracture).

Every time we have a new health crisis, everything else screams to a halt. Therapy sessions are cancelled, she doesn’t attend school, we don’t push her at home…

Her medical needs always supercede her developmental needs, and prevent progess.

And the problem is that I have no control over her medical issues. We do the best we can. I do a lot of research into potential therapies and procedures to improve her health. She has a mic-key button for feeding and meds. She has bisphosphonate treatments to strengthen her bones. We are on the waiting list for a fundoplication to better prevent aspiration which makes her vulnerable to chest infections. She wears her scoliosis brace 23 hours a day (on most days) to prevent compression of her lungs. She is on a range of medications and supplements to combat reflux, improve gut motility and strengthen her bones. We give her nebulisers and chest physio and suctioning to clear her secretions.

And none of this is enough to keep her healthy.

When we were last in the hospital, one of the doctors was doing a case history and asked me “what can Miss Z do?” in order to judge her level of development. I was at a loss for what to say – which is unusual because I can talk forever about Miss Z. There is a long list of things she can’t do, but the things she can do, by herself, fully independently, is very limited. I ended up telling the doctor about the one clear accomplishment that Miss Z has made over the past few years: her ability to better cope with new environments. I use the example of school to illustrate her progress: when she first started at playgroup (which meant 2 hours once a week, with me), she screamed the entire session until she fell asleep. She has gradually improved and now she attends one full day per week, without me, and copes quite well. See, she has made some progress…

Special needs parents talk about ‘inchstones” rather than “milestones” to reflect the fact that their children develop at a much slower pace. But even an inch feels like too big a leap for Miss Z most of the time.

I know I’m being negative and ignorning a lot of the tiny progress that Miss Z has made over the years –  it does exist. In fact, before her latest fracture, she was doing some (very minor) weight shifting in her walker, suggesting that she is learning she has to put weight on one foot in order to lift the other. However, this is the third time we’ve tried to get her started using a walker, only to have to scrap plans because of a fracture. And there is always the fear that even tiny steps, like shifting her weight, will be lost in the interim.

So, as the opportunity for all that early years intervention gradually slips away, I wonder if I should have tried harder, spent more time working on skills, pushed her carers to do even more. Or if it wouldn’t have made any difference. It is easier to blame myself than it is to accept Miss Z’s limitations. Or to contemplate what the future holds for a little girl with such chronic and complex medical issues.

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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…