Sorry for not having updated the blog but we have been in hospital for five nights, arriving home exhausted and traumatised last night. So this is my first opportunity to fill you in.
Last Thursday night at 6pm Oscar's temperature hit 38 and we had to head in to emergency. They were informed of our impending arrival so that when we arrived we would not be sitting with the general population and exposed to germs. I arrived at 7pm and was put in a small isolation room where the nurses took a full history, took his bloods and did hourly observations of his temperature and blood pressure. Emergency was like a war zone - one of the busiest nights they have had in a long time - and as I looked around outside my window at queues of people sitting on the floor holding sick, injured or hysterical children I couldn't help thinking about what it would be like if you were a survivor of a natural disaster like a tsunami, flood, etc. There seem to be so many of them in the news these days and I cannot imagine what it would be like to be in trauma without any proper care, let alone compromised care. I felt very lucky to have my own room and to have nurses attending to us.
I knew it would be a long wait so I settled Oscar in his pram and sat and read, promising myself no matter how frustrating and exhausting the process was I would stay calm. I would be Gandhi, full of wisdom and non-violent good will. At 2am we were finally sent to a room on Variety Ward where there are isolation rooms - because of Oscar's exposure to chicken pox we weren't allowed to go back to the familiar Camperdown ward, which is the children's cancer ward that we spent 17 days in at the beginning of this journey. I had to wake Oscar to put him in a cot which they wheeled up to his new room. Before we left the nurse took his temperature and blood pressure so I was a tad frustrated when they wanted to take it again when we arrived in the new room just 5 minutes later. It woke and upset Oscar as he was sick of being messed with, scared of being wheeled into a new room in the middle of his sleep and not coping with the relentless poking and prodding. I didn't say anything though as they are just doing their job and it is hospital policy they have to follow. I am getting to know the bureaucracy and trying hard to be patient with it even when it does cause Oscar what I consider to be unnecessary disturbance. Seriously, could his temperature have changed in five minutes? I reminded myself - you are Gandhi - be calm.
Of course, after sleeping soundly in his pram in emergency where I had nowhere to sleep, now that we are in a room with a sofa bed for me Oscar screams his head off for the next couple of hours. The movement into a new room and a new stranger taking yet another blood pressure sent him into extreme distress. I felt my own heart tearing as I tried to calm him but he had been pushed beyond his limit. I wanted desperately to point out to the nurse that he has been an angel and has incredible tolerance. Every other young child in emergency was relentlessly screaming their lungs out and he managed to cope with a team of strangers in a very bright fluorescent room coming at him from all directions with such grace - could they not just have rewarded him for being one of the few children who had required almost no attention in a place of trauma? Could they not have let him alone for another hour to settle? Ahhhh
At 4am he finally slept, at 5am they woke him taking observations, 5.30am back to sleep, 6am more observations and blood taken and then no return to sleep. Oscar was wired and anxious and jumpy for the rest of the morning. Our nurse was unfriendly and gruff with us and wanted to take blood with a pin prick in his finger despite the fact that he has a central line for that very purpose - to make it easy and painless for him. And so on.
The next shift of nurses came to convince me to hand over Oscar's formula so that they could prepare them in a sterile environment and have them in the fridge ready. I resisted this after my experience last time where I was at the whim of nurses to bring Oscar his bottle and ended up setting up my own miltons and making them myself so he wouldn't have to wait when he wanted his comfort bottle. This is the one thing left that I can do for him. I cannot protect him from the pain, the traumatic procedures, the constant stream of strangers poking and prodding him, the exhaustion of the disease and the drugs that cure it. In hospital I can't even give him the comfort of his own bed, his brother, his daddy etc etc. Literally the only things I have left to give him are my good humour, my cuddles and his bottle. So I didn't want to give away control of the bottle but they insisted it was hospital policy. I warned the nurse, "If I can't get a bottle when he is distressed and wants one you will have an hysterical mother on your hands. Please hear me when I say this to you." Don't worry, she says.
Of course when he wanted his bottle 3 hours later they still hadn't made them up and had to go to the dietitians to get my formula back to make them. It took another hour and a half to get it to Oscar's mouth. By that time he was hysterical, banging his head on the cot and saying over and over, "bobble, bobble, bobble" (his pronunciation of bottle). I felt so anxious and distressed I absolutely lost my mind at the nurse who had promised me this wouldn't happen and finally the bottle appeared, not warmed as promised and Oscar threw it at the floor and threw himself down on the cot beyond hysterical. He wouldn't let me cuddle him, he was hitting me and I just couldn't breath. I felt trapped in an isolation ward of hell.
I won't bore you with what the next 5 nights and days involved but it was like that only sometimes significantly worse, sometimes better. The relationship of trust they say they try to build was well and truly broken and I was stuck in a small room with a toddler who wanted to go outside and play, couldn't get his bottle when he needed it, missed his brother and daddy, had a mouth full of infected and huge ulcers, was attached to two iv drips at all times that twisted around his body as he played and tore at his central line - and there was no other choice.
This experience has deeply traumatised me, more so even than the early days of his diagnosis. It is tremendously challenging having a child diagnosed with a life threatening illness but to also feel a distinct lack of professionalism and quality in the care of your little baby going through this journey is another kind of distress. So I feel a need to withdraw, contemplate, do yoga and meditate each night and try to find my way through this darkness back to the light and the positivity that Oscar needs and deserves from me.
I am deeply disappointed in myself for not being as evolved a human being as Gandhi was - but then Gandhi wasn't a mother.
Please keep sending your positive vibes and prayers and I will update you with more of the medical stuff soon. I just couldn't get it all together in my head to explain what is coming up next. We are in clinic tomorrow, lumber puncture Monday, bone scan Wednesday and yet there is more. I will tell you soon.
In this moment of now I must retreat and find some peace.
Thank you again for taking this journey with us.