Living in hospital!

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.

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.
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).

“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.

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!


Hospital Birthday

Two years ago Matilda was as sick as a dog on the morning of her birthday. I remember her dad (Marty) saying he wished we could rewrap her presents up and give them to her again as she barely seemed to be there. Two days later we knew she had HSV encephalitis and our world changed forever.

Once again we have celebrated Matilda’s birthday in hospital….same hospital but a different type of life-threatening encephalitis (medical update below). So how do you  make a joyous occasion out of all this muck? How do you give her and us happy memories of turing eleven? Well heres what we did….


Face-time with the lovely Cinnamon who couldn’t be with us.

Our plan was to keep it short but happy.  The past two years have really taught us to ask for help from our lovely friends and community. Despite the fact that it meant a day off school and a more than a two-hour-each-way drive, two of Matilda’s BFF ( shout out to Sia and Grace!) and parents joined us for a party. Marty was with her at the hospital, so Reuben and I spent the night in Brisbane so that we could be there at the crack of dawn…well 7 a.m!

BFF’s in da house …..well ward actually.

After a serious amount of present opening the girls went of to The Starlight room (activity centre for games, face painting, craft & general fun for hospital kids and their visitors) whilst we decorated and generally took over the lush rooftop garden.

Decorating pillow cases…sign your name across my heart!

My wonderfully crafty friend Jane had helped me purchase all of the required fabric crayons for decorating pillow cases and had even gone the full nine-yards by making jersey beanies on to which the kids attached giant pom-poms they made.

Byron Bay Beanie Babes & Bro!

Passers by commented on our healthy party food (Dah, we come from Byron Bay man!) but maybe they hadn’t seen the raspberry cake surrounded by chocolate eclairs!

Yum! Matilda almost ate the wrapper!

I started to shed a tear when the hospital foundation volunteers arrived with a pressie for Matilda. Those compassionate & generous souls in green aprons/shirts have made so many dark days better during our long hospital stays.

Could she get any more pressies?
Picnic and more unwrapping!

Finally it was time to pack up our party. To leave our lovely Matilda to chill out and let her brain have some recovery time.

One last goofy photo!

As a family we can only pour out our immense thanks and gratitude to everyone who has helped us over the past weeks and especially yesterday to make Matilda’s birthday an event that she will recall with fondness and happy memories.

Medical Update:

Well, even our good days can be murked up by yucky stuff. Matilda had 5 seizures yesterday, the last of which was a fair doozy. Anti NMDA encephalitis is a horrible disease and its scares me when I read some of the awful consequences on the website to support families.

Matilda is 3/4 of the way through her first set of treatment with Rituximab (an IV infusion) and also monthly steroids/immunoglobulin treatment. Her severe behavioural changes have dampened down,  although they still flare up suddenly. Her seizures appeared to have been controlled but seem to be on the increase again despite being on 5 different anti-seizure meds. We love the team at the hospital and their care but this is very frightening stuff. She may come home after her last infusion next week but it depends on a whole heaps of factors.

Matilda has started doing more and even venturing a little out of the hospital. This disease will be with her and us for a very long time. Throughout the rest of her life she will be at higher risk of neurological conditions and relapse. And thats if we are

Last night I bawled my eyes out and for the first time asked ‘Why my beautiful girl?’. It is a silly question. This is not a targeted attack but an unlucky coincidence. I was sad that my family were separated, because Matilda & Reuben have had to be braver than I would ever wish them to be and because I am terrified about our future. But as her lovely friend Grace wrote in her card…Matilda has a lot of GRIT and so help me if she can have it, so can I. XXX


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.

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.

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.

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.

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.

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.

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.