Saving Zali

by Lisa Venables

  Tina was also really keen on sleep and pain relief as therapy. There had been discussion around us about reducing Zali’s fentanyl drip in case she should develop an addiction to it. Each time it had been reduced her heart rate and fevers increased, showing that she was in pain. This meant that the amount she was on, although large, was the correct amount for her.

  Tina felt that a patient had better recovery if their pain was managed well and they could sleep. In Zali this was particularly important because sleep is very significant in improving immunity, especially against colds and viruses, and it also improves heart health. Add to that a better ability to manage stress, and sleep becomes very important.

  At lunchtime each day Tina made sure Zali had diazepam, a sedative that helped both her constant underlying pain and her sleep. I would wait until Zali went to sleep and Tina would usher me out, kindly but firmly explaining to me that it was easier for Zali to sleep if the room was quiet and she wasn’t disturbed. If Za woke before her two hours’ designated rest, Tina would not have a lot of interaction with her, so she could doze on and off until she was ready to wake up fully.

  For the rest of the day, Tina would talk to Zali constantly, explaining what each medication going into her was, how the blood products would make her feel, and what she was going to do next. We had Tina often for about four weeks then we didn’t see her. She was off lecturing and training again. We had her for a brief and intense period of time, installing rigorous procedures and habits that were the absolute best for my baby, then she floated away.

  Chapter 38

  Monday 10 August 2009, 100 days in hospital

  53 days in PICU

  During the month of Tina, Zali had three tubes going up her nose, two small ones in one nostril and the ventilation up the other. To tell you the truth, after the initial shock, like any doting parent, we just didn’t see them. They didn’t interrupt how we saw her face, and memory filled in the places that were covered by tubes.

  The two smaller tubes were a nasogastric tube and a transpyloric tube. The nasogastric emptied out into her stomach. When you are extremely ill the stomach muscles stop pulsing and working and everything put into it just sits there until it’s vomited out, rejected. Zali’s stomach lining had also calcified, so even if it wanted to work it couldn’t, as it was frozen rigid, so the transpyloric tube had been inserted too.

  The transpyloric tube went past the stomach and entered the bowels through a small opening. As there are so many blood vessels in the bowels, it is a good way for medication and the intravenous feeding (TPN) Zali was receiving to be absorbed by the body.

  The ventilation tube works by being inserted up the nose, down the throat and through the vocal cords, paralysing them. It passes through the small flap that gives rise to the ‘down the wrong tube’ comment people make when they splutter on water, then finishes in the lung. It provides oxygen directly to the lung so someone who is unable to breathe on their own can do so.

  Because the flap was always open, she couldn’t have any food or water as it could go into the lung, causing all sorts of problems. Not that she was hungry anyway. Weaning her off that ventilation was extraordinarily difficult, and more than once it was taken out only to be put back in an hour later as she was gasping for breath.

  None of these tubes is a great long-term option. The transpyloric tube in particular was precarious because the bowels move so much it’s easy to dislodge. When it’s dislodged it curls up in the stomach and everything that has been put down it ends up in the stomach, which in Za’s case wasn’t working. On 10 August all the medication went into Zali’s stomach and she promptly began to vomit it up.

  The nurses tried to get the TP line back in. The most experienced nurse in this area gave it a go but had no luck. They tried putting a wire through the tube to fortify it and get it back in, but the valve it had to pass into wouldn’t open. Eventually she had to have the tube put in under fluoroscopy in the Radiography Department, in a different part of the hospital.

  To get Zali to the room where this was done, her bed, the machines monitoring her heart rate, blood pressure, oxygen saturation and whatever else needed to be monitored that day, and her ventilator, all had to be moved slowly and carefully by a hospital aide, two nurses and a doctor. Andrew and I went with her to keep her calm because that too was just as important a health consideration as anything else. She was terrified as we left the room. She had spent so long in the same room, and good, bad or ugly this was her comfort zone. I felt like that sometimes after only fourteen hours there. We calmed her down, talking to her and singing songs on the way. Even regular long-term, live-in patients stared at us as we went past in a careful, tender progression.

  When we entered the room, Andrew and I had to put on lead aprons. Zali had one too. I remember it clearly. It was a purple Wiggles lead apron. I was impressed that Wiggles marketing had reached this far. I didn’t know if I was grateful or disgusted.

  The well-meaning experts put nursery rhymes on the stereo to calm Zali, but after so long in a quiet PICU room, it sounded like a freaky loud circus act in the large echoing room. Coupled with unfamiliar faces so close to her holding her head still and the ketamine she had been given, poor Zali must have felt like it was a noisy, dizzy mess. We couldn’t be near her because there was no space around her, and the time of these experts was very costly for the hospital. We didn’t want to be in the way.

  Zali had the tube put up her nose and into her stomach. The technique is to take an X-ray of where the tube is and move it into place, take another X-ray, attempt to insert the tube, take another X-ray to assess whether it is in, attempt it again, X-ray again, and so on until the tube is in. This tube was so important that this had to be done.

  Zali hated it. She twisted and tried to get away the whole time. She screamed and cried constantly. Although she was intubated, her screams were loud and clear in my head. Finally, the tube was inserted and we could go. Zali was exhausted. She didn’t have enough energy to expend on this fight. She went to sleep as soon as we got back to the room and we left to go home for the evening equally exhausted.

  The next day we returned to a completely different-looking Zali and a room full of experts. Zali’s stomach was stretched out in a tight, shiny round shape even under her ribs, pushing them outwards. It looked like a balloon fully inflated before it bursts. I was alarmed and assumed that the tube had pierced something or that a major organ had finally deteriorated as a result of the LCH. She couldn’t move one little bit she was so inflated.

  The doctors and specialists didn’t know what was wrong but had called the gastroenterologist to help. He came fairly quickly but was nonplussed at this rude interruption to whatever he had been doing. He felt her stomach, noted the displacement of her intestines, read the notes and said, ‘It’s gas.’ My heart sank as I imagined some fetid organ rotting inside her releasing poisonous gas.

  ‘So what happens now? When can the surgery be done?’ I asked him.

  ‘It’s gas,’ he replied, ‘there is no operation for it.’ He went to the end of the bed, reached over and held Zali’s legs behind the knees. He pulled them gently up at right angles in front of her, out wide, then up to her chest. As he did Zali let out a long, noisy, flappy but not wet, fart. Zali was surprised. She wasn’t expecting it. I’m not sure she knew where it had come from but she moved a bit more comfortably as he put her knees down.

  I burst out laughing, but the matter was not funny to the man who dealt with farts for a living. He gave directions to the nurse on how to continue to release the air and left.

  Zali’s tube was perfectly in place, but in all the screaming she had swallowed a lot of air. It was also possible they had used air to place the tube by inflating her stomach, forcing the small entrance to open. The nurses and the parents were to continue to help Zali release the gas by lifting her legs. Every few hours we helped Zali fart it out by copying the doctor’s movements, and Zali was able to pass the last bit herself. By the next da
y her stomach had returned to its normal size and she was comfortable again but, much to the disappointment of her brother, out of farts.

  Two days after the transpyloric tube was reinserted, on Thursday 13 August, the bile duct between her gall bladder and liver became blocked. As the bile duct got blocked, bilirubin, the waste product from the liver, was building up instead of passing through the gall bladder, which in turn affected the liver. Zali’s liver was already inflamed, four times the size it should be, and failing. As the bilirubin built up, Zali’s poo became white, her urine brown and her tears and saliva yellow. The kidneys were trying to pass the bilirubin but weren’t able to, so it was coming out anywhere else it could.

  If any of these organs – gall bladder, liver or kidneys – was unable to remove its waste products, it could cause sepsis and death. We had already experienced kidney failure and sepsis. This was all definitely on the cards for Zali when this tiny duct became blocked.

  Apart from the overall yellow appearance of Za, she was acting strangely. She was irritated, and behaving a little like she was hallucinating. She was very uncomfortable and wriggly in her body, but not in an insects-under-the-skin kind of way. She would hit at anyone who came close and kept feeling herself wherever she could reach her body. She was sleeping even less than the small amount she had been, and was showing no social tolerance for anything or anyone.

  A surgeon explained to us that the bile duct was part of a group of veins on the liver that looked like a tree. Its placement meant that when it was inflamed, it pressed on a nerve that affected several parts of the brain that controlled heart rate, respiratory rate, sleep cycles, psychopathology affecting social interaction, cognitive abilities, perception of the body and touch on the body. So, she was getting messages in her brain about her body that were very confused and were affecting her already fast heart rate. He would have to perform a small operation to fix the duct but it could be done in Zali’s room and the risks to her were minimal.

  We agreed. What else could we do?

  He put a tube into one of the ‘branches’ above the blockage, and this diverted the bile out of the liver and out of the body. It was caught in a bag that was taped to Zali’s stomach. Her urine would be collected from a catheter in her urethra, and its colour monitored to assess whether bilirubin was still in her kidneys.

  By taking pressure off the duct, removing the bile, and perhaps widening the duct he would be able to assist all the organs to recover some function. The tube could be removed after five days and with any luck the blockage would be gone.

  The operation was performed. The duct was closely monitored for five days, then the surgeon removed the tube and closed up the five-millimetre hole.

  The result was great. Zali slept really well once the duct was better, and she was happy and interactive and friendly again. She almost seemed to have her contentment back, albeit in PICU.

  Chapter 39

  Thursday 20 August 2009, 110 days in hospital

  63 days in PICU

  Two nights after the bile duct drain was removed and the wound closed, I woke up at 2 am in the RMH unit completely alert. Any parent will tell you that this type of arousal is usually related to sensing something being wrong with your children, even though I already knew that something was always wrong with Za.

  I called Za’s room in the hospital, and the nurse told me everything was normal. I checked on Lach and could hear him breathing.

  I lay in bed trying to get back to sleep but I couldn’t, so I got up. I got dressed in baggy grey tracksuit pants, a tracksuit jumper, sneakers and a beanie because it was cold. I slipped out through the door of the unit, which banged heavily behind me, and walked over to the hospital.

  The night was cold and damp and a fog was trying to form in the air. I walked down the street along the sparsely lit footpath to the completely dark bridge over the river. I was slightly fearful that someone might jump out at me from the dark bushes. I didn’t really care that much though. The dark doesn’t scare me. Whatever was in it needed to be afraid of me that night.

  Nevertheless, it felt good to get past the bridge and the big RMH and arrive at the hospital. There was muted ambient lighting in the building, and a feeling that comes from the softness of a building full of sleeping children. I buzzed myself in with the security pass I’d been given for such late-night visits.

  As soon as I was in I wanted to run in panic to Za’s room, run up the fire escape steps, run down the corridor, shoulder barge the doors open, then … Then what? What would I do? Me with all the answers. Me with all the certainty. Me with all the strength. What would I do?

  Nothing. Nothing is what I would do. I’d take my rage and disappointment and fear and sadness and drag my sorry, fat arse home. My body was so full of adrenalin from days of terror that sleeping now did nothing for me. I had woken up completely ready to fight and take action, but there was no action to take and I was here in the middle of the night with nothing to do.

  Climbing the stairs was good. I took them two at a time. I walked into PICU and into Za’s room.

  Chrissie was on, Zali’s favourite doting nurse. I must have looked like the hell I felt because she didn’t say anything and I made it clear I didn’t want to talk. She kept on working at her computer, checking medicines, noting the numbers from the four coloured lines on the monitor. It was almost dark in the room except for the soft light above her computer.

  Zali was sleeping, which was unusual. I sat down on a chair next to her and hoped that being there would be peaceful for me, that it would ease my soul that she was safe and comfortable. I didn’t have any thoughts. My mind was blank, but my body was full of instinctive responses.

  As I looked at her my tears fell and fell. I didn’t often have big cries in front of the nurses because we all knew what was happening in this game of LCH. As I was in such an honest, basic mode I let the agony come up from my stomach and roll through my throat. I acknowledged to myself that this battle was not likely to be won. Chrissie brought over some tissues but still didn’t talk. I lay my head next to Zali’s little bottom and looked up at her head. She woke up and started her silent crying when she saw me. I hushed her and stroked her bald head, my arm across her body in the best embrace I could give her. She fell asleep again and I went home in the dark before I disturbed her any more.

  That night I had desperately needed some peace. I had hoped that seeing her sleeping and calm would help, but it didn’t.

  I faced myself in the dark that night. When I couldn’t find the peace I was seeking, something in my mind broke.

  For the rest of the night my mind talked to me. It drew a self-portrait as I told myself what I looked like.

  I am a stick figure splayed out on a piece of white A4 paper with a hospital header. My head is a black circle made up of numbers; days in PICU, percentage chance of recovery, minutes to get to the next safe point, red cells, white cells, neutrophils, albumin. Counts of magnesium, potassium, calcium, phosphorus, alkalinity, acidity, heart stress, liver function tests. Milligrams of medication, number of chemotherapy sessions, the time Lach finishes school, the time Andrew will get here, the date for the next specialist appointment. Bills, bank balances.

  My body is a long red line. Red for red blood cells. Red for failing organs. One arm is white: white cells as in lack of response in, overproduction of. You can’t see it on the white paper but you know it’s there by the damage it has done. One arm is bright yellow; it represents the radiation bins for the waste of products used to treat my radioactive daughter. One leg is purple, the colour of the Oncology Department in a children’s hospital, and one leg is pale blue for the colour of the paint on the concrete walls around me.

  I’ve lost the ability to have conversations with people. I think I’m on the edge of going quite mad. I can’t open my mouth to speak very well because my grief is represented in numbers and medical terms, and it will spill out of my mouth in a meaningless way. Its rigid bulk is too heavy to sit on the light
weight frame of chitchat.

  Thoughts of her death fill my head. I don’t think I want to live if she dies. I know I’m not quite in that head space yet here in the middle of the night. I don’t have a specific plan. I do know it wouldn’t involve my work pistol. There would be too much drama and noise that way. It would be too showy. There’s too much chance that it mightn’t work.

  I know that this choice is exceptionally selfish and cruel but the grief is intense and I am already carrying more than I think I can. If she dies will this pain double? How could I double what I already can’t hold?

  I have fallen down this hole further than I thought possible. I thought there would be a rock bottom, a limit I could stop at and push off from. I thought there must surely be a cosmic boundary where things stopped from going too far.

  This is too far.

  Nothing is stopping it.

  I’m falling.

  Chapter 40

  Thursday 27 August, 117 days in hospital

  70 days spent in PICU

  My mum came about a week later. She gingerly commented that Zali is tough. She’s a fighter. I corrected her and told her Zali is not a fighter, and she is definitely not tough. She is strong. She is holding on because it’s the right thing to do. By being alive each day she is showing me how strong she is. She is incredible because she doesn’t think anything of it – it’s just how she is.

  My mum put her arm carefully around me and my prickly persona and hugged me. ‘Just like her mum,’ she said. She went back to Brisbane later that same day.

  That night I thought about what Mum had said to me. In my life I have always picked really difficult challenges and thought nothing of them until I was 75 per cent of the way through. At the 75 per cent point I would freak out and think there was no way I could face this challenge even though it was nearly finished. I would think the job was too hard, I wasn’t ready, I couldn’t do it.