Living in hospital!

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Tilly FaceTimes with her class at Byron Bay Public School as she gets ready to go home.

Holly macarolly!  We have spent one third of this year in hospital since Matilda was diagnosed with Anti NMDA encephalitis and this was on the back of her previous long stay in hospital for HSV encephalitis and two years of rehab. Tilly hasn’t attended school since March! I cannot calculate how many lumbar punctures, EEGs, cannula insertions/IV treatments, medications or obs procedures Matilda has been through. Her dad and I have been like ships in the night taking it in shifts to be in the hospital and haven’t spent a whole night together for over four months. Her big brother has had to take on a whole new level of household chores but also independence and freedom.

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Slumber party – parents’s bed next to Tilly’s.

Living in hospital for so long (and its our second time) I think has potentially changed me forever. I like being organised and running my own show but living in a large children’s hospital means that you are always at the whim of other people’s schedules and timetables. I have always been a light sleeper but find now that I can tolerate way more noise after sharing a room all night with an AIN (assistant in nursing) squirming around on a noisy chair (as they watch Tilly for seizures) and beeps, bells and buzzers going off continually. I have always hated being cold at night but now find myself sleeping and driving with the windows wide open as a reaction to constant air-conditioning in the hospital.

So here are some of my (the mum) tips on not just surviving but thriving (well so some degree) during long stays in hospital:

  • Food: Our hospital food is pretty damned good actually but we still bring lots of food from home. Really this is to cater for Matilda’s preferences (well ,hey what else do you have when your really sick!), health issues (Matilda put on a lot of weight due to drugs and inactivity so we wanted food that was high protein but low carbs/sugar) and fresh, crunchy veggies (hospitals can really kill broccoli).
  • Exercise: Even on bad days we try to get Matilda up and about, if only to walk around the ward but preferably to go outside and get some fresh air & sun. When she started having ‘drop seizures’ the staff were keen for her to be in a helmet and wheelchair. We developed a ‘hands or helmet’ policy. This meant so long as we had our hands on her so she wouldn’t fall, we didn’t need the chair….so more walking. I’ve done a stack of ‘Dunny Yoga’ (yoga in the ensuite bathroom) whilst she sleeps with my head out the door so I can see if she has a seizure. I try when I am at home to jump into the ocean, have a walk (man, I almost had a coronary walking up to the lighthouse!), go rollerskating or get to a yoga class. It’s hard to cast off the idea that this is a luxury but when you a stuck in a room most days it is imperative.
  • Accepting help: It is ridiculous and amazing how hard it can be to accept help from people. Why are we taught top try to stand alone? It is so stupid and doesn’t help anyone. Our community has been fantastic. We have been supported in a million ways – house cleaning, donations, drawings and songs, laundry folded, prepared food, shopping done, visits form friends and family, sitting with Matilda, shoulders to cry on, treats like books and massages, hours of FaceTime….the list is endless and every little thing has stopped us from going totally doolally and freaking out.
  • Making: Every member of our family makes stuff. Matilda makes things for her fairy house. Reuben builds Gundams and planes. Marty joins in the plane building, general fixing and carves spoons. I crochet, knit and  dabble in spoon carving too. All this making helps us to move our brains away from focusing on fear and towards creativity and positivity. It is mindfulness in action. I am convinced that for us focusing on making stuff has been crucial to keeping us going.
  • Don’t wait to be told stuff:  I love our hospital and the staff but I can’t tell the number of times we have had to chase things up, find out when procedures were going to be done, what was happening with medication, has an AIN been booked or the letter we needed get written. They are big places, the teams change frequently, people go on leave, have babies, change jobs and sometimes things get missed. As a friend with a child who has a disability told me – you are not on this journey to make friends. Being respectful  & understanding of the systems limitations is important but ask for what you want, ask when you don’t understand – never presume that they have your kid covered. Thats our job! As parents/carers are the only people who can really create ‘continuity of care’ for our loved ones. So don’t be shy.
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Byron-ish decorating touches.

It is strange because for all that living in hospital is a nightmare and at times just a drag, it is often when we are at home that anxiety and fear hit us. It is then that we toss and turn and become overwhelmed by too many thoughts flooding our minds as we try to imagine how the future will be (or maybe thats just our Koalas making too much noise).

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“Why are there lots of tiny people in your phone?” asks the captain.

Bringing Matilda home soon does not mean ‘going back to normal’. It is more akin to hitting a total ‘reset’ button. Although the cast and crew of our play are all the same, the script has been totally rewritten. Today I am having an OPTOMUCHTIC (too much optimism) day and feel like we have all been given the opportunity to be better versions of our selves as individuals and as a family and that dealing with this crappy situation is going to help us to listen and understand each other more, rather than the trench warfare that adolescent years can often being with family members firmly fixed in immovable positions. But you know if you had asked me on Friday after speaking with the consultant psychologist I probably just would have bawled my eyes out and admitted that I can’t imagine what the future will be like.

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Fast asleep after an exhausting visit to the hospital school.

So for now we have to just hope that our plan to come home in a week will come off. We have had a few ‘drop seizures’ today and we just need for them to stay at a reasonable level! Then we will have the fun process of looking for support workers to help us and dealing with the NDIS. What fun!

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Here we go again…

It’s gently raining outside and more than anything I don’t want to think about hospitals or what has happened to us over the past few months. A deep well of hot anxiety and fear starts to rise as I write this and prepare to return to Matilda in hospital today. But so many of our friends near and far would like to know what is happening, so here goes…may my tea be strong & hot enough to get me through.

Despite all that Matilda had lost and had to bravely face since she has HSV encephalitis in June 2015, we had started to muddle our way through.

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The best ‘natural’ surfer in the family!

Matilda still only attended school for three hours a day but her teacher, aide and I felt we were getting on top of a good program. We had applied for funding for some assertive technology to help compensate for her poor literacy skills but we were happy that progress, even though very slow was still happening.

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Matilda had started to do Craft-a-noons – an after school activity with mates.

Then in March this year (2017) she started to have more seizures and different kinds. We wondered if it was just that it was the end for the first term and all the kids were a bit stuffed. The paediatrician & neurologist increased her medication and decided that we would continue with our plan to go on a road trip to see family down south….all in very short hops and well orchestrated to help Matilda cope. Marty and I have always wanted to fill our kids lives with as many positive experiences as we can to balance out some of the really tough times they have been through recently.

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Saying hello to new cousin Felix alias ‘Chuckles’

But it all went a little pear shaped (too many seizures) and we found ourselves in a bit of a mad dash to get her back north so that she could be admitted to the big children’s hospital in Brisbane where the team new her well. At this point we thought the major crisis was dealing with her uncontrolled seizures. Her EEG showed almost constant seizure activity and they increased the number and dose of most of her medications. Matilda’s thinking, language and levels of activity had dramatically reduced and they also gave her steroids to try to reduce any inflammation in her brain and perk her up. She also had an MRI to make sure that her scar hadn’t altered within her brain and a lumber puncture to test for antibodies for other types of auto-immune encephalitis, which at the time they thought was unlikely.

You know the news isn’t good when two neurologists arrive at the bedside at 7 pm as you are reading your daughter to sleep and want to change her medication and ‘have a chat’. They had found then antibodies in Matilda’s spinal fluid for Anti-NMDA receptor encephalitis. The easiest way for me to think of this is a bit like severe Tonsilitis, when the body fights itself so hard that it makes itself sicker. They started Matilda on first line immunotherapy and more steroids. Thats when the rages started and they wondered if it was a reaction to the steroids or ‘road-rage’ as the nurses call it.

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Matilda became deeply unhappy with rapid mood swings.

What we didn’t really understand was the psychological changes that the ‘antibodies’ can bring about – screaming, aggression, violent outbursts, psychosis, paranoia and obsessive thinking. We tried to bring Matilda home last weekend and found these rages meant that she was very unsafe. Anything and everything could be a missile and she seemed incredibly fast and strong. Our neighbours and friends stood by us but our small army was not enough. As it was no longer safe to travel in the car with Matilda, her neurologist in Brisbane arranged an across state border home to hospital ambulance trip. It was only when the ambos arrived and they explained that they had never heard of such a thing that we started to realise just how concerned her team was.

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Matilda sedated  in the ambo on dash back to Brisbane.

Even Matilda’s paediatrician had never heard of not having to go through a local hospital to be transferred. Matilda raged at retuning to hospital and in the end had to be sedated for the 2 hours journey. When we arrived  back at LCCH in Brisbane it became apparent how concerned they were. We have a ‘assistant in nursing’ in our room with us 24/7. The room was cleared of all possible projectiles.  Over the next few days the heads of neurology, psychiatry and rhuematology all conferred over her case. She is about to start infusions (Rituximab) to wipe out her B cells and has been stabilised a great deal by careful psychiatric medication. She has been obsessed with an American Girl doll and the staff have been lovely, helping us to hunt all over the hospital in case she is hiding there! Yesterday she had a small seizure as they had reduced some of her anti epileptic drugs to see if they were impacting on her mood.

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One of the wonderful AINs who have helped us all day & night.

And here I run out of words. It will soon be Matilda’s 11th birthday and the anniversary of her contracting HSV encephalitis. I cannot explain how distressing it is that she will most likely be in hospital for this birthday and that we all feel like we have gone back in time by two years. Really it is worse this time. Neither Marty nor I can work as we need to change over in the hospital every few days as it is so  physically and emotionally tiring.  We do not know how long we will be in hospital for this time but after our last ‘not so brilliant’ attempt at coming home, I suspect we won’t be coming home any time soon.

We are blessed with people near and far who have generously supported us. In an era where so many people just seem to be out for themselves, it makes such a huge difference to have people around you acting out of compassion and nurturing. Even with all those hands and minds holding us up, it feels like a lonely and distressing bubble to be in. The ‘world’ continues unnoticed, as our lives are focused on the very small microcosm of a hospital room and home. Even when we have a day at home we are preparing, food, clothes and games for our return. I want to believe that everything will turn out OK in the end. I want to believe that they will kick the antibodies up the arse. I want to beleive that one day our lives will resemble ‘normal’ at least a bit.  But I also know that if I let my feelings out for second, I feel like I am being repeatedly dumped by a wave and it is getting harder and harder to get to the surface to fill my lungs with air……………

We will try our hardest to keep you all posted . Big hugs y’all.

Seizures

Seizures make me cry. Since early May Matilda has developed seizures. In the scheme of things ‘seizure-ish’, Matilda’s would currently be considered very mild. Many families are dealing with way more than we are . But despite my best efforts to convince myself otherwise, seizures change everything – subtle shifts through to absolute fault lines.

 

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Luckily she has learnt how to swallow tablets & capsules!

Seizures mean that the small amount of freedom Matilda had won back over the past year has been eroded. We hang closer to her as she is less stable on her feet and ‘shadow’ her when she is with her friends in case she has a seizure.

Seizures mean that we have to fill our little girl with medication, that has three pages of side effects I wouldn’t wish on my worst enemy. Most of the time we don’t know what is impacting on things like her speech – is it the seizures, the medication, fatigue? And you know what, neither do the doctors.

Seizures mean that at times she is so tired she can hardly function and our plans for slightly longer times at school may hit rocky ground (or at least how she is at home afterwards). Pushing dinner times out a little later or socialising with friends in the evening is becoming harder not easier (on the bad days).

Seizures mean that normal 10 year old girl activities need to be strategically managed – sleep overs, play dates and parties. Shorter, with mum doing the emergency medication talk or hovering in the background, leaving before all the others, only with one friend – never quite free.

Seizures mean lots more doctors appointments and not necessarily more solutions. We try to arrange ways that Matilda doesn’t hear the chat or discussion over outcomes/side effects/recent deterioration but there are times that this is hard to avoid.

Seizures mean  that Matilda has mentioned hating her body or being broken more often. She is tough and this only happens when she is at her absolute low-battery setting but on top of normal early-puberty issues, it strangles my heart.

Seizures mean that her 12 year old brother Reuben knows all about what to do in an emergency situation and that we have a sign on the fridge for what to say when you call for an ambulance.

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Getting ready for a recent EEG

Seizures mean that we check how far it is to the nearest hospital and if they have a 24 emergency department before we go away. Our car recovery policy will get upgraded too in the event of a breakdown!

Seizures mean more talks with the teachers at her school and kids in her class. They have all proven that the more they know, the more supportive that can be.

Seizures mean that I have no way to forget the horrible night when she was first ill and a seizure almost took her. I think often, almost daily of the doctor at her head, keeping her airways open, telling me to keep talking to her, that she could hear me, as she shook on the bed. My tendency to overprotect her has gone through the roof and I am constantly fighting my inner urge to check on her, hold her hand, not let her go too far…….

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Mum stands by trying to act cool but freaking out!

 BUT seizures mean we are still here. We are still in the game and prepared to do what ever it takes. This may be a temporary reality or for the rest of our lives. There are chances that it could become significantly worse or possibly better. Either way as a family and as a community we will roll with it, breath into it. Sadness and despair tap on my door. My yoga teacher read a beautiful quote from the poet/writer David Whyte from Consolations (link here)

Despair turns to depression and abstraction when we try to make it stay beyond its appointed season and start to shape our identity around its frozen disappointments. But despair can only stay beyond its appointed time through the forced artificiality of created distance, by abstracting ourselves from bodily feeling, by trapping ourselves in the disappointed mind, by convincing ourselves that the seasons have stopped and can never turn again, and perhaps, most simply and importantly, by refusing to let the body breathe by its self, fully and deeply. Despair is kept alive by freezing our sense of time and the rhythms of time; when we no longer feel imprisoned by time, and when the season is allowed to turn, despair cannot survive.

Breath, hope, step forward.

Medicine -A spoonful of sugar?

I know this may sound very naive but I didn’t really think about what the medications Matilda is taking may actually be ‘doing’ to her until this weekend. I am full of respect for the hospital team that have been working with her and switched off a bit. Maybe it was just too much information to soak up. Maybe it was a numbers thing. We had reduced the dose and number of her medications quite a  bit as we transitioned home from the hospital. So less equals ‘good’ or at least ‘everything’s oki doki’, right?  The words ‘side effects’ however are now ringing in my ears and I have slightly weakened friendship with her meds!

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Medicine paraphernalia in our hospital transition phase.

Matilda is on an anti-seizure medication and a B6 supplement to mitigate the effects of the ‘side effects’ of the anti-seizure medication. As well as Melatonin to help with sleep.

Lesson #1    Repeatedly check that you are giving the right meds at the right dose.

One day I went to the chemist and bought the B6 supplement at a lower dose. I thought I had doubled it to match what we usually gave her. I also naively underestimated the impact this supplement had, thinking ‘Ah its just a vitamin.’ WRONG!  We had about four weeks of daily meltdowns before I checked her dosage sheet and realised we were 50% down on her dose. Taking this back up coincided with a return to a less roller coaster life. I had made two mistakes here – one was not really understanding what the B6 was for and the other was thinking that I could hold all this information in my head without checking.

Lesson #2   Know the side effects of the medicine and monitor them.

I am now wondering if much of what I have felt was due to Matilda’s ‘acquired brain injury’ is in fact due to the side effects of her anti-seizure medication. She has a very high chance of having seizures if she is not on the medication but it comes a huge cost. The rages, otherwise know as ‘brain fireworks’ are scary and emotionally shake us all down. When I stuffed up her B6 we felt their full weight. Part of me feels as though I am poisoning her to keep her safe – not a great feeling as a parent.

Lesson #3 Really listen to your kids when they talk about changes to their bodies.

Matilda has real problems explaining pain. Is it pain, tingles, cramps? She will do things like scrunch up her hands because she can’t explain exactly what it feels like. A few weeks ago she started complaining of pain in her hands and feet. And after we increased her dose of B6 after a recent hospital review, she continued to complain but also said her eyes hurt. At this point I hit the internet and this set in chain a process of reviewing what she is taking, blood levels, possible toxicity etc.

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Constant monitoring feels a little like being Sherlock Holmes.

They say it takes a village to raise a kid. I feel like it takes a big team of people and a gazllion trillion neurones to look after Matilda. There is no sitting back and letting it all happen. It’s all about the little details.

Whilst relying our medical team and their advice, we have also begun they journey of pondering alternative or complementary therapies. But thats a whole other post folks.

Remember to keep your eye on the ball ya’ll!

 

 

 

Looking after yourself!

I don’t know about you guys but I am a great one for  offering advise to others that I am not so good at following myself! So in the interests of following this slightly hypocritical tangent, I implore all carers of people who have had HSV Encephalitis to LOOK AFTER YOURSELF!

I can’t tell you how many times I’ve  heard the airplane analogy over the past five months  – you know that you have to put the oxygen mask onto yourself and then onto your child. Professionals and friends say this to encourage me to make sure that I stay healthy mentally and physically so that I can be fully capable for Matilda and my family. But often it just makes me want to scream WHEN? HOW?

My husband and I have had quite different experiences of our journey simply through different family roles and personal perspectives. He is a ‘cup half full’ type of guy and has spent much of the time at work. I tend towards a little more scepticism, have professional back catalogue of knowledge (which increases my fears) and have been the one attending most of the medical/funding appointments. So even we may differ on how to support yourself….ourselves. I’d like to share some of the things I have tried.

Good fuel

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If you can’t eat healthily try to drink healthily!

In the dark days on the wards it was almost impossible to eat well despite our lovely friends bringing us home cooked meals. For a while we boosted ourselves with veggie and fruit juices with ginger and lemon. There are a lot of bugs in hospitals and trying to keep yourself healthy on little sleep, high stress and a poor diet can be tricky.

Make technology work for you

One of the young nurses in intensive care suggested that I start a Facebook page to help our family and community keep in touch, after I moaned at not being able to deal with phone calls or so many texts. It was a brilliant idea. One post, all done. I kept my words for Matilda.

Bend and stretch reach for the stars…

Exercise and fresh air are pretty crucial for me – they keep me on a mentally even keel but can be tricky to prioritise in a crisis.

Initially I walked around the hospital roof garden and after a few weeks I would leave the bed side for a quick power walk to a local cafe to grab a take out expresso. The round trip took less than 15 minutes but got me out of the air conditioned hospital. As Matilda became a little more capable I was able to leave her with close friends and family for an hour and swim at a local pool. Every time I returned, I felt more capable that the saggy self who had slunk out.

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The pool I could use at a private school close to the hospital.

Once in rehab I started doing yoga from Yoga With Adriene on-line. Matilda hated me doing it beside her bed so I ended up doing this is the en-suite. Led to some pretty funny looks when the nurses changed over in the morning.

We all have to find what feels good and try to squeeze a little of it into the day. I have become the queen of the 10 minute exercise session. I rarely say ‘I don’t have time’ anymore because I know that even a little wincy bit helps me have a better day.

Unpack the bag – finding the right people to talk about it with

When the social worker first booked to see me at the hospital I was like’I don’t have time for this!’ but also a little ‘I don’t wanna talk about this again as I am sick of bursting into tears.’ but she was right and I was wrong. I did need somebody who wasn’t so close to the situation to express all my messy feelings to. I didn’t want to load up my family and friends with more that they were already dealing with but needed to let out some of my own fears and anger somehow. I am determined to try to find the right people to talk with as this long process unfolds.

Make something

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Wonky blanket from a wonky time.

I love crocheting and do it as a meditation. In the hospital we asked all of our friends to send us balls of wool for a blanket for Matilda. I could crochet in the dark whilst she was sleeping and when I was too exhausted to read. It is both wonderful and the worst piece of crocheting I have done in years…all wonky in the middle. But the process of making can sometimes really sooth.

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Recent attempts at hand building with clay at a local workshop.

Love & fun – partners and siblings

We are family! I was away from Reuben and Marty for months. We were all like ships that past in the night when we are normally more like a stack of cushions all bunched down one end of the couch! On the days when I was with Reuben we would stay extra long chatting in bed in the morning and lie together on the couch to watch T.V. We treated ourselves to more sushi than we could afford (his favourite) and Skyped the hospital when we could. My husband and I have managed one date night together in 5 months!  I can clearly remember our first meal back together again as a family and the first time we all slept under one roof. Every person and family will be different but simple gestures to show your love for each other become even more important when circumstances are pulling you apart. I think we all had to learn to bend and sway a little more or as Martina Navratilova loves to says ‘don’t sweat the small stuff’.

Guilt – The dark side

I have guilt about most aspects of my parenting skills as many people do. Taking time out for all the things that I have mentioned adds to my feeling of guilt that I am putting too much energy into myself and not into my family.

But here’s the thing, I also have a researcher’s mind. Over the last few weeks I dropped the bundle. My eating went pear shaped, I did hardly any exercise, I started avoiding social interaction and was spending heaps of time in meetings for funding etc. No surprise I ended up feeling lousy, covered in a stress rash and less able to make decisions/juggle everyone’s needs. Evidence showed me (and most of my friends) that not looking after myself was not such a good idea.

To use a Star Wars analogy guilt over looking after yourself is the dark side. Be  a Jedi for you and yours. Listen to the force, follow the force! It will show you what you need to be mentally and physically ‘match-fit’.

So maybe do something nice for yourself, get some fresh air, cuddle someone you love, have a nanna nap, eat well, get sweaty doing some exercise, talk to someone or make something wonky.

Take care ya’ll.

Play – the early days

When you and your family are side-swiped by something like HSV Encephalitis, it is REALLY hard to find pleasure in anything. It is so hard to breath, eat, shower and sleep, so the idea of laughing or pleasure seems, well absurd!

But here is the thing. You need it. I needed it. Matilda needed it too. Reuben needed it in buckets. Laugh, smirk, enjoy. Mix your grief and fear up with a little play and laughter or comfort, if it happens to find it’s way to you.

Here are some of the ways we did it!

Hipster barista consultant

One of the consultants (head honcho doctors) in intensive care had a beard, moustache and clothes that were groovier than I would normally expect in that setting. I am a massive fan of a double espresso and the minute I clapped eyes on him I wanted to pretend to order a coffee.

These were desperately sad days, full of uncertainty and bucket loads of fear. Each time the urge to order came over me, I had to stifle a giggle. I had a cough and needed to gown up and wear a mask. You can see where this is going…I too had to become a hipster-barista too!

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Therapy dogs

I can clearly recall the first time the therapy dogs came to our room on the wards. Matilda had been extremely agitated and distressed all morning and was now asleep. We were both exhausted. A gentle knock on the door and there was our therapy pooch. I was about to ask them to return another time as ‘the patient’ was sleeping but then checked if it was ok for me to have a cuddle. I sat on the floor and wept into his soft furry neck.

Dr Cecil Hellman describes how a Navaho friend explained that her grandfather, a traditional healer, told her that when you are exhausted from healing others you should ‘…stroke a horse or a newborn baby. Both of them are so full of energy. You will feel much better if you touch them, straight-away.’ (Suburban Shaman p166). We didn’t have a horse on the wards but lots of lovely dogs.

Matilda and I absolutely loved visits from the dogs and their owners. I loved that these compassionate people saw in their pets a special gentleness and innately knew that people like us needed a bit of a furry cuddle.IMG_0172

Visits from friends and family

Matilda was easily agitated and sleeping a great deal. Initially it was hard to imagine her being with friends. Every time I mentioned it she said no. Then her cousin who is about the same age came for a visit. They don’t know each other well but Grace was a gem. She quietly played with Matilda or just lay with her on the bed watching TV. When Matilda slept, Grace read her book. Soft, gentle and easy.

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This made me brave enough to feel a visit from a close school friend would be OK. I was so worried that it would highlight for Matilda the extent of all that she had lost. Our wonderful friend Kate suggested that she bring her daughter Sia up during a school day. This was some offer as its a pretty long drive (up to three hours in bad traffic!) and Sia missed some school. They would stay all day – play simple games, walk to the hospital garden for a picnic, do therapy sessions together and then sit quietly as Matilda slept. Sia was a great help in enabling Matilda to have baths without tears and help us all envisage a happy social future for Matilda.

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Volunteers

Lady Cilento Children’s Hospital had a range of volunteer services to support the children and parents. These angels in ‘green vests’ would show up in the evening, just when I was losing the plot and help us through the last few hours before bedtime. I would explain about Matilda’s language issues and one volunteer would generally be on ‘her team’. They played games, did craft or just blew bubbles.

Having other people in her life really took the pressure out of us being together 24/7 for so many months. It is invaluable to let other people help you. These play sessions let Matilda stretch her wings, not just talking to Mum, Dad or therapists. The time to just sit and not be fully ‘on call’ was wonderful after long days and often very sleepless nights.

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So if a little fun or pleasure finds a wee crack….invite it in, one tiny little sparkle at a time.

How it all began

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Heaps of kids in our neighborhood had been crook. Our eldest had been at home with a ‘bug’ for a whole week, which had never happened in his 7 years at school. Matilda had complained of a headache and thrown up once. She was cranky and agitated but we had cancelled her 9th birthday party, so that seemed reasonable. One morning a few days into her illness, Reuben commented that he couldn’t understand what she was saying, and neither could I.

After that it all happened so quickly. Matilda’s eyes reflected fear and her mouth was a locked sound ‘ah-ah-ah’. Something was seriously wrong. We drove quickly to local hospital emergency department. We now know that what I thought were just tummy bug symptoms, were in fact the neurological agitation as the HSV Encephalitis started to take hold and attack her brain.

Matilda was rapidly transferred by ambulance to a larger base hospital. The swift action of the medical team once there in starting her on anti-viral medication, almost as soon as she arrived, probably saved her life and without doubt has led to a much better prognosis for her. An MRI, lumbar puncture rapidly followed. There was loads happening and she appeared to be deteriorating. Over that short period of time she already was losing her ability to answer orientation questions Where are you? What is your name? How old are you? Each garbled answer made us feel waves of nausea.

That night she tossed and turned. In the early hours of the next morning she had a massive seizure. The medical emergency team (MET) raced to her aid – keeping her alive. We found out later that her seizure lasted an hour. It was a long seizure. Her temperature was too high. It felt like it had taken everything they had to control the seizure and the fear was not just mine.

In the early hours of that morning Matilda was transferred to the Lady Cilento Children’s Hospital in Brisbane.

This is how Matilda’s journey with HSV Encephalitis began. Usually it develops over a period of days but, like any other viral infection, depending, for example, upon the immunity of the patient, the disease may take a variable course. Typically it begins with “flu-like” symptoms followed by neurological deterioration, which may include personality and behavioural changes, and perhaps seizures and dysphasia (difficulties in communication). If untreated, it may lead to progressive impairment of consciousness, coma and death. (The Encephalitis Society) It is an extremely rare illness.

Matilda was in hospital for just over 3 months . She was slow to respond to the anti-viral medication and had further seizure activity. She spent longer than expected in the paediatric intensive care unit (PICU). She can only recall the last few weeks of being in hospital.

We are now in the early phases of settling into a routine at home. Matilda attends school for approximately two hours a day and has a steady diet of therapy and tutoring. Fatigue is a major factor and if Matilda becomes too tired this can result in agitation, temper and a great loss of the skills she is working so hard to regain.

In mid-November 2015 she will return to the children’s hospital for another round of assessments and medical review. For now we are muddling through and finding our feet.