Saving Zali

by Lisa Venables

  The door was opened wide and Zali’s bed was pushed in. A large monitor next to her bed was turned on and various tabs placed on her so that blood pressure, heart rate and respiration could be easily checked. They were displayed as large red, green and blue lines and numbers on the screen. A nurse set up her computer at the end of the bed against the glass internal wall while another was on her computer immediately next to her in the other room. Thus two nurses were watching Zali all the time, and nurses from the nurses’ station could see in all the time, as could passing doctors or nurses. I didn’t like being so exposed, but I was relieved that any problem would be immediately detected by several people and acted on.

  There was no bed for parents in this room. All the available space was needed for machines and equipment. I wondered if they really expected parents to leave their children in their time of greatest need? I could see that they were good, but I wouldn’t trust Zali or her treatment with anyone. What if they missed something? What if something went wrong and I wasn’t there to point it out? What if she woke up and was upset that I wasn’t here and they couldn’t comfort her. It was ridiculous.

  Andrew went home and I stayed with Za.

  I pulled up a chair next to Za’s bed, and began to stroke her arm to help her get back to sleep. She’d already had Panadol for the fever but it wasn’t breaking, so wet napkins were placed in her armpits to help cool her down and it was starting to work. I leant forward and rested my head against the bed, stroking her arm and silently crying.

  A nurse came over to me and turned the light on above Zali, waking her. She talked at a normal level to me as if it was the middle of the day and not the middle of the night.

  ‘You’ll need to move your arm, it’s interfering with the monitors. It’s probably better if you don’t touch her at all and just let her sleep. You can go home now. We’ll call you if something goes wrong.’

  Zali started crying, distressed by the noise and the light. I wanted to punch this woman straight in her offensive mouth and tell her to fuck off. How dare she tell me how to parent my child in the worst moment of our lives?

  ‘I’m not going. Keep your voice down, you’ll keep her awake. Also, don’t you have a torch or something? That light is really bright,’ I snapped back.

  She answered me by turning her back, farting, with great lashings of sulphur, and walking back to her computer. I turned the light off, and could see there was still plenty of ambient light left in the room for her to see Zali. I quietly choked on her stink as I rested my head again and started patting Za’s leg, making sure to keep clear of the tabs monitoring her. The less the nurse and I spoke to each other the better. The nurse came over and checked and rechecked what she was doing, constantly doubling back to the computer, constantly asking the nurse next door for clarification. It was not reassuring.

  Brad came in shortly after the malodorous incident. He was quiet, respectful and concerned. I liked him a lot. It was the middle of the night and I could see he was wired for action. I could almost see neurons firing in his brain as he looked at results and made assessments. I was comforted that he checked on Zali and that he decided she was under control.

  After that a tall, skinny, bald doctor came in to check on Zali. He introduced himself loudly to me as Dr Anil and said he was sorry we were here in the ward under these circumstances.

  I told him to shush – Zali was sleeping. He nodded in acknowledgement and started checking the monitor as I placed my head back on the bed. This would have been a comfortable position if it weren’t for the fact that Dr Anil jiggled and swayed his hips from side to side when he was thinking. It probably helped keep him awake at this early hour of the morning. Unfortunately, my head on the bed was at crotch level, and every time he turned to talk to me or the nurse I had a jiggling crotch in my face. I turned my head the other way but had the same problem because he moved to get a better view of Zali. I rested my forehead on the bed and tried to doze while the nurse ummed and ahhed and double-checked every medication Zali had. At least the air was clearer now.

  I consoled myself by counting down the minutes. Eventually the minutes would add up to hours and we would be closer to leaving this new critical care unit and be back in Variety where I felt more at ease. Dr Anil saw me checking my watch and decided as I was awake he would explain what the problem was. The amount of excess fluid Zali was carrying made it difficult to give her any medication because it added to the amount of fluid in her. Her blood tests showed her kidneys were not functioning well and diuretics would not necessarily help the problem as they too went through the non-functioning kidneys. Chemotherapy introduces a toxic substance to the body and the kidneys’ role is to filter anything unnatural out of the body. It may be that the chemotherapy was just too strong for her body to manage.

  The lungs are like a huge sponge and they were soaking up the extra fluid in her body. They were then too heavy for Zali to inflate properly and so were causing her respiration problems. Heart and lungs go together and the soggy lungs were making it more difficult for her heart to beat, so her heart rate was high. The high heart rate made her body release adrenalin, which made it difficult to sleep and interfered with the hormone and immunity functions restored by sleep. One organ failing made the whole machine fall apart. The kidney specialist would come in the morning and they would consult with him about what to do next.

  I was extremely upset by this battery of problems Za was facing but it was nearly 3 am and I was just too tired to react. So long as I stayed by Za’s side I could lend her my strength to just get through until morning. If I could keep an eye on the farting, short-sighted nurse and show Za I was there for just three more hours until changeover, there would be a new nurse. New nurse, new day. Maybe the bad news would stop raining down on us with a fresh day. I just sighed and put my head back on the bed.

  As I started to doze off I felt a warm heavy blanket being put over my shoulders. Out of the corner of my eye I could see it was Dr Anil. Credit where credit’s due. I was pretty prickly that night, and his act of kindness was a brave move. I did appreciate it.

  Chapter 23

  Friday 19 June 2009, 48 days in hospital

  First day in PICU

  At 6 am the next morning, two new nurses arrived and so did Andrew. The nurses’ names were Patrice and Ann-Marie from what I could see on their name tags. It looked like Ann-Marie was a very experienced nurse and she was leading Patrice, a newer nurse, through PICU. Patrice was young and short and stood in a dancer’s first position with a strong core as she listened. She looked as if she was from Singapore, with her brown flawless skin and rounded accent. She was smart, alert and insightful. Her thick straight black hair was in a ponytail and set on the side was a bright-red glittering clip in the shape of a bow. Ann-Marie was also short, Caucasian with short brown hair tucked behind her ears.

  The nurses briefly acknowledged us as they began a debriefing with the nightshift nurse. The nightshift nurse explained that Zali’s medication had been a problem for her during the night. Fitting it into a routine where everything could be given to her but not overwhelming her fluid levels had been a big challenge. She then lapsed into medical language I didn’t understand so I tuned out and watched Za.

  She was so swollen her eyes were now bulging out like a frog’s. Her whole body was smooth, without one single crease in the joints, and her arms and legs were inflated straight out from her body. She was straining her chest to breathe, each breath an effort. It must have been exhausting for her. Andrew and I chatted and talked to her as if we were just going through our usual morning routine but she was distressed and hard to calm. She cried out a lot for Andrew to hold her. Even if she was well enough to move he couldn’t have held her because of the catheters and respiration equipment around her.

  I did a coffee run to get a break and saw Kath, Kala and Lachlan as I went to the cafe. Kath and Kala looked harrowed and totally stressed. Lachlan was just really glad to see me and hugged me then wouldn’t let go
. We all went to get coffee together as I told Kath about the night and the state Zali was in.

  We all knew Za was in trouble; even Lachie did as we walked back to the ward. He was surprised we were still staying, and really didn’t want to see Zali the way she was. I let him go to the Starlight Room to play video games. He was desperate to avoid any emotional difficulty as he was already at the end of his ability to cope. Kala, Kath and I returned to the room and Andrew left to have his coffee.

  When Kath and Kala started talking to Zali she just cried, her eyes showing she desperately wanted to be cuddled. Everyone worked on distracting her and awkwardly cuddling her as she lay on the bed. The super-competent Patrice worked around us, resolving the medication routine and getting Zali’s treatment organised. Andrew and I didn’t talk about what was happening. We just focused on keeping Zali happy. It was a desperate, maniacally happy day.

  During the day Virginia the chemo nurse came and gave Zali another dose of chemotherapy. It literally made me sick to think of it. I left the room and threw up and didn’t return until I was sure it was over. Zali’s heart rate had been between 150 and 160 beats per minute the whole time she had been in PICU. My heart, although it didn’t beat that fast, beat hard enough for both of us.

  Andrew stayed Friday night. He slept the same as I had but with a better nurse. Saturday was grim, with a bloated, in-pain Zali, and discussions began about putting her onto dialysis to ease the pressure on her kidneys. Saturday night I stayed again, unable to believe that with all this medical attention, nothing had happened yet. I didn’t sleep at all that night but slept for a few hours during the day while Andrew watched her. When I woke I offered to stay Sunday night. There was no point trying to sleep at home. Adrenalin fuelled my terror and there was no chance of peaceful sleep. My heart pounded hard in my chest all night, screaming a warning that something enormous was looming and I needed to be ready to fight on Monday.

  Chapter 24

  Monday 22 June 2009, 51 days in hospital

  4 days in PICU

  On Monday morning the day crunched in, violent shards of sunlight reaching in through the uncurtained windows, waking Za. This was now our fourth day in PICU, much longer than a usual stay. By lunchtime, she had calmed down a bit because the dosage from the fentanyl drip had been increased and the medications evened out. She was still holding a lot of fluid but the renal specialist had been and was working on a solution. We felt exhausted, but also that progress was about to be made. As Za dozed off for her lunchtime rest, we all cautiously left the room, completely depleted and ready for a break.

  Wearily we went to the cafe and ordered lunch and strong coffees. I stared at my chicken Caesar salad, pushing it around the plate as Kath talked through lunch. She was telling Andrew that everything would be all right, that the specialists at the hospital were very good. She nervously prattled about life in Cooma, life in the hospital and anything else she could think of. She was so scared but thought we would be soothed by conversation. Kala supported her chatter as best she could, offering comments when there was a break, but her heart was heavy. It was written all over her face. We were all trying to be brave and not cry into our salads.

  Halfway through lunch Andrew received a phone call from Ann-Marie. She said Za had crashed and we should come immediately. Andrew walked as if his feet were in concrete, while Kath was going as fast as she could but it was only a slow walking pace for us. When we got to the top of the stairs and entered the corridor leading to the PICU I ran to Zali’s room, with Andrew not far behind. We barged through the fire doors that are always kept closed for patients’ privacy and ran up to her room. We found the glass door wide open and the room full of nurses and doctors. As we watched, several alarms on the monitor started screaming hysterically and a nurse slapped it with an expert shot and silenced it. This happened several times. Other nurses ran in past us with a large tray on wheels full of medication and medical apparatus. The room was full, and they were all crowding around Zali on her bed. I couldn’t see her.

  Dr Gilles came to the door and guided us to some chairs immediately outside the room. He was a short man of slight build. He walked slowly with a stoop from years of carrying the world on his shoulders. He had soft, grey, curly moppy hair and wore round glasses that magnified his soft world-weary eyes. As we plopped down heavily on our chairs he sat next to me.

  He told us Zali was having major organ failure. The stress on her body was too much because she was simply so sick. He told us they had already brought her back three times and that things were very bad. If the pressure couldn’t be relieved in her body she would soon have another heart attack and die. He let out a heavy sigh as the news fell on us hard then slowly walked back into the room to assist the other three doctors already there.

  Kala came and sat next to us. She told us Kath was waiting outside in the PICU waiting area. She had sent Kala in to find out what was happening and to cheer her dad up. It was well-meaning but just so out of place. Andrew just stared grim-faced at the room Zali was in, and at the floor, tears quietly rolling down his pale face. He was holding my hand and we were both cold and sweaty and shaking.

  This was not the place for any child. No matter how mature Kala felt, she shouldn’t see her baby sister like this. She definitely shouldn’t be here if we were about to experience Zali’s last moments. I told her that Zali was dying. They had brought her back a couple of times already but it wasn’t looking good. She sat there stunned and pale. She was scared and uncertain of her place. I told her that maybe she could go and let Nan know what was happening and that maybe they could call Grandad and tell him to come and help. Relieved, Kala agreed and left quickly to go back to her nan.

  Dr Gilles came out of the room with news. He said that in order to relieve pressure on Zali’s kidneys they were going to have to put her on dialysis. If they didn’t she would definitely have a heart attack and die. It was a risky operation and she may not survive it. There was a possibility she could have a heart attack over the next twenty-four to forty-eight hours after the operation. She was very vulnerable. They were going to perform the procedure in three minutes, and he could give us two minutes to see her.

  Andrew didn’t understand what was being said and didn’t stand up to go into the room.

  Dr Gilles repeated, ‘I can give you two minutes with her.’

  Andrew replied, ‘No thanks, mate, it’s all right, you just do what you have to.’

  As I walked to the door I pulled Andrew up with me. ‘Babe,’ I said firmly, ‘Dr Gilles said that Zali might die during or soon after this operation and we should say goodbye in case it doesn’t work.’

  As we walked into the room I stopped myself crying. Zali would be scared if she saw me crying. The room was silent. Not even the machines beeped. The nurses parted and I could see Zali lying on the bed. She was unconscious, bloated and naked. She looked so vulnerable and fragile and I immediately wanted to cover her and give her some dignity. There was a catheter coming off her skull, the central line under her collarbone had two lines coming off it, there was a catheter coming out of each hand and elbow, as well as a catheter in each femoral artery in her groin and a catheter at the top of each foot. She had a tube taped to her nose that went up her nose and into her lungs, breathing for her. There were two tubes coming out of the other side of her nose.

  I was shocked. She looked like a science experiment suspended by wires, with medication being pumped into her. One doctor explained that she didn’t have brain damage, they just needed to put a line in wherever they could get a vein, and there was one on her scalp. Andrew sobbed next to me, completely choked up with the horror of it all. All I wanted to do was pick her up off the bed and make her safe. Snatch her back and run down the hallway. Take her away from this. Everything was racing so quickly and I felt like we were losing our precious baby.

  The nurses all moved away and I leant down and put my face next to Zali’s. She smelt like the moisturiser I had been putting on her scalp, a
nd that musky baby smell of sweat and milk. I knew the done thing was to tell her that if she needed to go, she could. I wasn’t that gallant. It was not okay for her to die. She could not go.

  I felt like she was floating, listening and waiting for me.

  ‘I love you, Zali,’ I said. ‘Stay with me,’ I commanded her.

  Immediately, alarms started screaming and Za started to crash. Nurses leapt to the bed and an enormous machine was wheeled close by. We were pushed out of the room by the sheer numbers of staff moving in to put her on dialysis.

  Dr Gilles sat on the chairs outside waiting with us. He had a solid, reliable energy. Dr Elle was inside with Za, hooking her up to dialysis. Dr Elle was beautiful, an Italian with short curly blonde hair. She could speak at least five languages, was highly intelligent, practical and competent. We heard Dr Elle say they had put one artery on. There was a wait of an aeon, then she said the other artery had been put on. I heard the steady beep-beep of the machines. There were no alarms. Nobody was barking instructions. The air eased out of me slowly, then Dr Elle came out of the room smiling.

  ‘All done,’ she said, smoothing her skirt down. ‘Oh damn, I’ve got some blood on my new skirt.’ She smiled a tight smile and walked quickly away to the staffroom. Her quick exit betrayed her enormous relief that the job was finished. Dr Gilles told us they would keep Zali on dialysis and in a medical coma for the next week to give her body a chance to recover. As he said before, the next twenty-four to forty-eight hours were critical, and after that we could work out what to do next.