Saving Zali

by Lisa Venables

  11 days in PICU

  The next day was the sixth day of Zali’s coma. The following day it would be time for her to be woken up. The immediate risk of a heart attack had gone and her kidneys were functioning on their own. The doctors explained that first thing the following morning they would reduce the drug that paralysed her body so she didn’t move during the coma. After that they would reduce the drug that kept her in a coma. All going well, she should wake up slowly on her own. They would bring her back, and in a few days take her off intubation to breathe on her own.

  Having had no experience of someone coming out of a coma I thought the doctors would wait until we got there and she would wake up slowly to the loving faces of anxiously waiting parents. I thought there would be a briefing in the morning, a careful plan organised, then they would do it.

  Real life, however, is much more practical. Changeover took place at 6.30 am Monday 29 June. At 7 am the drugs were reduced to give the medical team time to get more specialists should something go wrong during the day. By 7.30 am, when we came in thinking we were early, Zali was awake and waiting for us.

  Everything was fine. Her heart rate was a little high and her blood pressure a little low but she didn’t fiddle with the tubes coming out of her nose and she wasn’t distressed. She was happy to see us and could hold our hand and move her arms and head. Her head movements were a bit awkward because of the intubation, but she was able to move.

  She could understand what we were saying to her but it took a while for her to get used to not being able to talk. The tube that kept her breathing went up her nose, down her throat, through her vocal cords and into her lungs. As it passed through the cords they were paralysed. She accepted really quickly that she couldn’t speak but it didn’t matter to me. I felt like her voice was in my head anyway and I could hear everything she mouthed. She could point out things she wanted, she was very tired, but very pleased to be back.

  Lachie and Kala came to visit. Lachlan was enormously relieved that Za was okay. He couldn’t bear to think that things could be worse for her. Also, he felt that if I was okay, he would be okay. Kala seemed a bit shocked that the tube coming out of Za’s nose was still breathing for her, but she was relieved that Zali had come out of the coma. Andrew had been worried that she wouldn’t come out of the coma or would be brain dead if she did. I had been worried that her body would wake up, remember the insults it had suffered and quit on her. None of that happened. It was all okay. Our friends and family went back home, and we got on with the business of waiting for the chemo effects to pass and for it to work.

  The view from Zali’s room in the PICU was really beautiful. There was a large Chinese elm that had lost its leaves in winter in the centre of the garden. It was as tall as the roof of the top floor we were on, but the branches didn’t come near the window. Even though it was bare, the sharp angles of the dark branches jutting out and crossing each other against the grey sky of winter were beautiful. I marvelled at their perfection even in a dormant state. I watched when raindrops hung off the branches then fell a cavernous distance to be caught in the koi pond beneath. It was poetic and perfect. Stripped of its beauty there was a matter-of-fact sense of rightness. It was winter, the plant was waiting while the world went by it, and so were we.

  Chapter 29

  July 2009

  I knew I had lost my joie de vivre because I no longer had any interests outside of the numbers that represented Zali’s health. Cooking and gardening are usually my favourite hobbies. It was that lack of interest in the world that made me cold and hard to reach. In conversations with people my mind was genuinely blank. I had no general knowledge about the world outside as I avoided the news. I couldn’t remember personal details about other people’s lives either. Workmates came to visit and when they asked questions, all my answers were especially sharp and pointed instead of light and easy, coloured as they were by the unwelcome lurking demon of LCH. The road was rough and I was dishevelled. Luckily people came and saw me anyway.

  Two of my friends from my mums’ group came and visited. My dear friend Jodie came heavily pregnant and my heart melted for her genuine sadness when she arrived. She had organised a babysitter for her son while her husband was away. He was Zali’s friend but he had a cold. Eight months pregnant, she had driven herself down to see me. I imagine she would have been afraid of what she would see when she arrived at PICU.

  Zali was sleeping so I met Jodie in the hallway outside PICU. She burst into tears when she saw me and sobbed and sobbed. She said she was so sorry that this was happening to me and to Za and that it wasn’t fair. It just wasn’t fair. It was wonderful to see her that afternoon and again be reminded that I was part of a caring group who supported me. Her conversation with me was genuine and heartfelt and I didn’t feel like I was indulging in chitchat, which I was no longer any good at. I connected to her on a deep level.

  My friend Tasha from my mums’ group also visited. James, her husband, and Chloe, her daughter, who was also Zali’s friend, came as well. Again I was touched by the effort they had all made, as it’s not easy travelling from the coast to Sydney with a toddler. Tasha’s visit was meaningful because she had spent time in the hospital when her daughter was small. She knew how lonely it could be, so she trundled her family into the car to come and support us. She was practical and funny, and I really appreciated her effort. Nobody likes to go back to the hospital who has ever been there as a patient. It was a selfless act.

  I had no idea how much colour, smell, seasonal changes and people I had in my life until I had to sit in a room and literally watch it go past.

  In hospital the world became monotonal. The seasonal changes didn’t mean anything to me any more. It was a seven-minute walk from our unit to the hospital, and once in the hospital it was always the same light and the same temperature. I usually only experienced the weather as I left the unit to go to the hospital in the morning and left the hospital in the evening to walk to the unit.

  I saw the same people and our conversations were about numbers and operations. We often had the same few nurses and travelled the same routes around the hospital. There were the same TV shows on, the same toys to borrow and the same books to read. And when friends came to visit I was completely out of interesting things to talk about outside of Za’s numbers.

  Chapter 30

  Mid-June to end of July 2009

  In PICU I employed my previous tactic of getting to know the nurses to break the tedium. I also decided to follow Andrew’s lead and make some friends. It’s frowned on a little in this unit and fair enough, really. Families are in this unit because their children are very close to passing away. The last thing anyone going through this experience needs is a cheery knock at the door from someone being neighbourly.

  I could recognise, though, other people who were experiencing their life in an isolated bubble, because that was how my life was. Sensitive reaching-out had never been my strong point, but I was developing it here in the hospital. The whole experience of hospital life was much more difficult if you didn’t have someone to talk to during the day.

  I made an effort and met a lot of families in PICU, and it’s what made the critical care, short-term unit feel like a safe, homely community for me. I met a man who had driven over his eight-year-old son by accident. He didn’t know his child was behind him when he reversed. I met a woman who was choosing not to have her vegetative son’s life support turned off because she felt that he was responding with his eyes to stimulus. I met a Kanak woman whose eldest daughter had accidentally dropped her ten-month-old into a communal fire. The bubba, despite having horrific full-body burns, was a sweet, happy baby. I met a mum whose child had developed a virus that had travelled into his spinal fluid and paralysed him. She wanted treatment at home in New Zealand where her family could support her. Her husband wanted to stay at Westmead where his family could support him.

  I also met a woman whose child had been born with half a heart. In true brave-baby sty
le he was just getting on with his life despite the incredible surgery he was going through to build the other half of his heart. We related to each other. She went through difficulty after difficulty. Each surgery was more dangerous than the last, and he kept on surviving. Her husband and parents looked after her other child while she spent long hours in the PICU.

  A patient whose parents I didn’t meet was a baby in the room next to us. I would have guessed that she was about two months old, but it’s really hard to estimate age in the hospital. From our room I could see her monitor through the glass wall, and what struck me at first was her high heart rate and her low blood pressure. It was similar to Zali’s high heart rate, racing away at about 165 beats per minute. She was so tiny, but she didn’t cry much in her little cot. She had all the same wires and tubes hooked up to her as Za except she had no central line, so she didn’t have cancer. She must have been a ‘heart’ baby.

  I worried about her, but she was kept constant company by the same nurses who were taking exceptional care of Zali so she was in good hands. Sometimes I saw a visitor or two come. Andrew said he saw the mum and dad come once. The dad was a tall, pale man in his fifties, the mum an Asian woman in her twenties. Apart from that we never saw them.

  It would be easy for someone outside the hospital to judge that these were bad parents because they weren’t there. It would be easy for a parent in the hospital to condemn someone who wasn’t there to witness their child’s struggle. But anyone worth their salt knows it’s more complex than that. I knew that I was far from being a perfect person and mother. It wasn’t up to me to judge someone else’s parenting.

  One of the nurses told me that the parents found it hard to get to the hospital because they worked all the time, they didn’t have a car and lived a long distance from the hospital. When they did get there it was by bus, because they didn’t have anyone to drive them. These people literally couldn’t afford to stop their life and get to the hospital. For them, being in hospital meant not working. No work, no rent money, no home to bring a baby home to. You do what you have to do, and they could trust the nurses to care for their baby.

  I came in one morning at about 6 am. The unit was quiet because it was full of sleeping children. After looking at Za’s monitor and getting her bloods I looked in on the bub next door. There was a nurse sitting at the computer, working away as per usual. I was surprised to see the baby was sleeping in a beautiful bassinet-style basket. The bassinet was encased in an embroidered valance and had soft material on the weave. The hood, with its frilled edge, was pulled over. It looked just as soft and gentle as the one I remembered my baby brothers sleeping in. I was so pleased to see her nestled into something so comforting.

  I said, ‘Oh, she’s off the monitors now, that’s wonderful. What a relief for the parents. She must be feeling so much better, too.’

  The nurse looked at me and shook her head.

  Then I thought about it.

  She was off the monitors. There were no tubes, no catheters and no wires. There was nothing left to monitor. The baby had died.

  Chapter 31

  Early July 2009

  Apart from those two nights in PICU I couldn’t stay there overnight with Za. There was no parent bed in the room, as they needed the space for equipment and to be able to move around the child easily. One of the reasons I could leave Zali each night as she went to sleep was that I knew the nurses looking after her had access to the best diagnostic equipment. They were highly qualified, they were smart and they had solid practical skills. The slightest change in any of Zali’s symptoms brought immediate attention. Disastrous events were treated immediately by doctors who were world experts in their fields. She was on their minds all the time, like she was on mine.

  More important than all this, and the true reason we held on as long as we did, was that they loved Zali. They didn’t just care for her medical needs. They were concerned about her happiness and made every effort not just to keep her alive, but to keep her well. At the start the nurses were distant, polite and professional. I guess as we were there so long we must have grown on them, and they loosened up under our persistent efforts to be friends. Nurses brought her presents in their time off. One nurse brought her a bubble gun because blowing bubbles was one of her favourite pastimes. Another brought stickers, others brought books and colouring books. All of her favourite things.

  They are a bit like coffee, the nurses. One time we had a bitter and sour nurse we really couldn’t swallow. She made the long day even longer and left an awful taste in our mouth that we remembered long after she was gone. We requested that in the interests of compassion we never have her again. She was hard work.

  Most of the time, however, they were sweet and mild. We could have them all day every day. They were tactful, extremely organised, diligent, insightful and just plain kind. Their work was beyond reproach and we looked forward to having them. They played with Za, sang her songs, set up Peppa Pig on a DVD, called in the play therapist and soothed her. They talked with us, they explained this complicated world to us, we discussed the world at large, and the very small bubble of the world I was in.

  They watched Zali carefully and knew her well. As her blood counts dropped they would prepare the next lot of blood infusions. They didn’t grapple as much as we did about the ethical dilemma of fighting over the last bag of blood available. They used their status and power to demand it. Za needed it so they were taking it. As I knew parents and children who had waited longer than we had for blood, I never felt comfortable with these decisions, but I was glad they made them for me. They looked up her condition in their medical libraries, a wealth of information I didn’t have access to. There were many essays, case studies and research notes they drew on to further understand what we were dealing with. Unfortunately, the sum of all the knowledge equalled the same answer we had in layman’s terms: a child with LCH as developed as this had never lived so long to become this sick and experience these complications.

  Papers were being written about Zali and the other girl as guidance for others who might follow.

  Chapter 32

  Monday 13 July 2009, 72 days in hospital

  25 days in PICU

  During this time we had an unpleasant surprise visit from a Police Association representative. My paid leave was quickly slipping away so Sarah from the Police Association and an inspector at the station had helped me negotiate my way through the system to keep it going as long as possible. Sarah had applied to the commissioner for a special favour on my behalf. When I provided a letter each month from our doctor, the Association delivered it to the commissioner, who paid an extra month’s leave based on my previous part-time hours. The letter outlined Zali’s deterioration and our need to stay at the hospital. It was incredibly generous of the NSW Police to pay this extra leave and generous of the Association to organise it. However, as in all micro-managed government fiefdoms, this leave was subject to verification and everybody’s two cents.

  By the third time I requested this leave, instead of me being asked to send a letter, an Association representative came to see us. He was a police officer but really resented other police in general. He called as he approached the hospital and said he was nearby and would like to talk to me in person about something. I agreed to it, of course. Sarah had done such an enormous job for us and I wanted him to pass on our thanks. As I met him in the busy public Emergency foyer to walk him through to the quieter chairs outside PICU, he told me why he was there.

  Approval for the letter to go through to the commissioner came from him. As he read over the latest letter from our doctor, he couldn’t help but notice that it sounded similar, almost an exact copy, of the one before it. It took a few moments for what he was implying to sink in. After all, it had been a while since I was called a liar and I had never been called a fraud. In an effort to make him as uncomfortable as possible I asked him exactly what he meant.

  ‘I’m here to see for myself whether Zali is still in intens
ive care.’

  I immediately fantasised about injuring him in a roundhouse kick so that he couldn’t speak. Ideally, I would turn so my back was to him. I would lean forward from the hips, placing my weight on my bent left leg and, lifting up my right behind me, I would brace my strong thighs and core, quickly turn my right hip to face the roof and raise my right leg in a right-angle shape, bent at the knee. With dynamic force I would bring my shin towards his ribs as I straightened out my legs. I could catch him under his heart, breaking his ribs and taking away his breath. I would step through as I landed and give him a sharp check drill, my two open palms hitting him hard on both of his pectoral muscles, and I’d send him flying. The force of the kick and push would stop him from saying anything else about my sick daughter.

  Instead I stayed quiet. I had learnt in hospital that the gravity of our situation spoke for itself when people came and saw us. I’m sure he interpreted my silence as submission. Fool.

  We walked through the corridor up to Za’s room. We walked past room after room of intubated children, comatose children, parents being told the machines would be turned off and badly burnt Kanak babies.

  ‘Is she still here? I thought this would be finished by now. Still here? This should be over by now.’ He began to splutter.

  I replied, ‘Yep. She’s asleep at the moment. They give her diazepam for extra pain relief on top of the fentanyl so she can sleep. It might be a bit hard to see her under all the ventilation tape on her face but she’s still her and we are definitely still here.’

  He charged up to the glass door, looking in at my sleeping daughter as he did. She appeared quite peaceful to me. I was glad she was resting. He put his hand on the handle as if to pull it back and shout ‘Gotcha!’ but then he stopped as he fully absorbed the machines surrounding her. The two nurses watching her both turned from their medications and apparatus to acknowledge him. The machines whirred quietly.