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.
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.
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.
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.
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.
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.
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.