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.
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.
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).
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.
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!
Matilda after HSV Encephalitis 