He turned around and left. He did not speak another offensive word as I watched him leave in disgrace. I hope what he did haunts him to the end of his days. Still, a swift kick wouldn’t have been out of place.
After that I called Sarah. She explained that three months’ extra leave was stretching the favour a bit far and that the Association was trying to get out of asking this third time if possible. I told her that I really appreciated all her efforts but if it came down to calling me a liar, then our relationship was finished. The leave was approved for the final time. I was very grateful to the commissioner for pushing his generosity so far and to Sarah for trying so hard for us.
Za’s lungs continued to be a problem for her, and after many weeks she still needed ventilation to support her breathing. She coughed a lot, a phlegmy, wet cough. When she did this she would have to be suctioned. Suctioning this fluid out involved disconnecting Za’s intubation tube from the oxygen being pushed through it. A very thin tube that sucked like a vacuum cleaner was pushed into the tube and the nurse wiggled it around and tried to suck out whatever phlegm or water had come up and was making her cough. The tube was then quickly reconnected. While the oxygen was disconnected Za had to hold her breath as oxygen leaked straight out of her lungs through the open tube. The suctioning apparatus was noisy, and having it put up her nose and down her throat must have felt invasive. It was horrible.
To find out what was causing this lung problem, each morning at 4.30 am Zali would have an X-ray of her chest so it was available for the morning changeover. A radiographer would come with her enormous portable machine on wheels. Zali would be lifted up and a cold, hard, dark plate would be slid under her ribs. Heavy sandbags would be placed on her arms and legs to prevent them moving and wrecking the X-ray. She could barely move anyway because of the muscle wastage she was experiencing. Everyone would then leave the room to avoid exposure to radiation and the X-ray would be taken.
Zali hated everyone leaving, she hated that she was unable to move at all, and the plate was painful for her to lie on. She would cry whenever she saw the machine coming and eventually just started crying at 4.30 am whether or not the machine was there.
After two months, the daily X-rays still showed fluid in her lungs, represented as a large fluffy cloud under her ribs and on top of the grey outline of her lungs. It was hard for her lungs to inflate when they were this heavy with fluid. The reason for her soggy lungs was unknown, but heart and lungs go together, so it was suspected that whatever was causing her high heart rate and low blood pressure was also causing her soggy lungs. Professor Kellie suspected LCH had travelled to both of them, a first in this disease. Another unwanted first.
Chapter 33
Tuesday 14 July 2009, 73 days in hospital
26 days in PICU
I have been heroic in my time, and had great acts of heroism performed around me and for me. When I was in the police we were called to a brawl at a dingy hotel on Glebe Point Road. Several recently released prisoners were fighting. One of them was bleeding and they were trashing the joint in the process. My partner Grant and I were almost immediately outside so we acknowledged the job from police radio and went in. As we ran up the flight of steps and into a corridor there was a highly agitated man pacing up and down the hallway. He was sweaty and disoriented from drugs and rage and his shirt was ripped. There was a trail of blood along the corridor that clearly showed someone was bleeding heavily and had taken refuge in a room halfway down the corridor. To check on the victim and to get a reason to arrest this agitated man Grant distracted him and I ran to the door where the bleeding person had gone.
I knocked heavily. ‘Police, open the door,’ I commanded.
I could hear the agitated man starting to shout and become physical with Grant, wrestling with him in his effort to get past. As I turned to run back and help Grant the door was jerked open. A large, muscular, sweaty man bleeding from his shaved head rushed forward and pinned me by my neck against the opposite wall. He raised his arm quickly and in his hand he held a broken beer bottle. I felt his body weight shift and he drove the bottle down towards my face. As I closed my eyes I felt the tip of the bottle brush my cheek and then fall away as Grant smashed into the man in an awesome rugby tackle. Grant and I arrested the bottle-wielding man, and further police who had arrived arrested the agitated man. That was the most heroic thing by far anyone had ever done for me. That was until Andrew took centre stage.
A doctor who I hadn’t had much to do with – let’s call her Dr X – decided one Tuesday in the middle of July to extubate Zali and see how she went. She reasoned that perhaps given a chance Za could breathe on her own. Tough love for soggy lungs, I supposed. Zali was extubated that afternoon at about 4 pm. I stayed with her until 11 pm because she was struggling. She wasn’t dropping quickly, but she wasn’t finding it easy to breathe. Eventually I conceded defeat. I was just too exhausted to stay there any longer. With a sincere promise from the nurse that she would call if it got worse, I went home.
At about 1 am the nurse called Andrew’s phone. They were going to re-intubate Za. She just couldn’t breathe on her own and was starting to become distressed. As Andrew told me the news I sighed deeply and sat up on the edge of the bed. He sat next to me heavily and held my hand.
‘I’ll be ready in a minute,’ I said, a deep silence settling over me as the unfixable nature of this problem sunk in.
‘I don’t want to go in. I really don’t want to see her so sick any more. I don’t think I can face much more,’ I said steadily as I rested my head on his broad shoulder, preparing myself to go in anyway. This was too hard for Andrew to watch and Za needed someone with her while this happened. We both knew that. These sorts of things were my job now. She would be conscious during it and it was too hard for her on her own.
He squeezed my hand. ‘Don’t worry, babe,’ he said. ‘You don’t have to go in. I’ll go.’
Within seconds he was dressed and out the door. I lay on the bed waiting for him and eventually went back to sleep. He returned home about two and a half hours later.
He had held Zali’s hand as she was intubated again. It was too risky to put her under anaesthetic for such a thing. She was upset but reassured by him being there. After the tube had gone back in she could breathe easily again. He had stayed with her until she went back to sleep, just stroking her arm and leg and letting her know not to be afraid, that he was there. Once she had gone back to sleep he had talked with Teo, a doctor we really liked. Not the famous Dr Charlie Teo, as he often said several times a day, just normal Teo.
Andrew told him how much he disagreed with Dr X’s decision to extubate. If such a decision was ever made again he would very strongly express his objection and would do everything he could to prevent it happening. Za was only to be extubated if she was able to breathe on her own and all the fluid was gone.
Andrew got Za’s stats, checked that everything was okay with the nurse and came home. In his own blunt and strong way he had done absolutely everything I would have. He had protected Za, he had protected me and he had made sure it wouldn’t happen again. Without a doubt, his act was more heroic than anything anyone had ever done for me before.
Dr X who had decided on extubation steered clear of us for a few days. One afternoon during her rounds she stopped in and brought up the topic of how unusual Zali’s disease in its current state was and that it was not at all common to have a child in the hospital with it. It was clear from her weighted conversation that she was edging towards a discussion about the other child in the hospital with the same disease, who Professor Kellie had treated with the same chemotherapy protocol.
I told her we knew of the other bub but hadn’t met the family. I explained that I understood her symptoms were more extreme than Za’s and that she was further along this disastrous path than we were. I knew that people were expecting that what happened to her would happen to Za next, but I was trying really hard to avoid those comparisons because it was very possible t
he other child would pass away soon, and I didn’t want people to expect that of Za. I also didn’t want to look at what was about to happen to Za, because I could barely cope with what was happening now. I couldn’t worry about someone else. I wasn’t even taking good enough care of the family I had.
The doctor nodded and said she thought it would be great support for the other family if they could meet us because they were really struggling and would appreciate having someone who understood what they were going through. They were lovely people.
I told her in return that they were lucky they were being treated in such a world-class hospital full of other people who could support them, but I had chosen deliberately not to meet them.
The doctor left disappointed. Clearly she had become close to the family and wanted us to as well. There was no way I was stretching our meagre emotional resources further than they were already stretched.
About an hour after that I looked on the whiteboard that listed the patients in PICU and saw the other little girl was about to come into the ward. The dots the doctor had been drawing joined up. I called Cecelia the social worker and she came and saw us immediately. I told Za’s nurse, Cecelia and Teo that I really didn’t want to be forced into a position of offering support to this other family. There were several beds available in the ward and there was no reason for her to be put next to us. They all agreed.
Half an hour later I saw through the glass internal wall that the little girl’s name was written on the whiteboard in the room next to us. Again I called Cecelia and she came to the ward. She went and spoke with Dr X, who felt we should all meet. Cecelia told her there were other beds. She explained how much I didn’t want to meet this other family and that there was really no reason why we should be put into a position where we sat staring at each other from opposite sides of a glass wall while our daughters were treated.
Half an hour after that the little girl arrived in the room next to us with her parents and I did what I desperately didn’t want to do. I compared her to Zali.
Where Za was wasted and frail she was bloated and fat from steroids. Where Za was intubated, she was not. I saw the dialysis machine being set up so knew that her kidneys were struggling too. Where Za slept with the assistance of fentanyl, she was alert and played with her parents from the bed.
I was horrified and disgusted. This arrogant doctor’s decision to force us to look at this other little girl devastated me. In the time we had been here, Zali’s disease had progressed faster than the other girl’s. Zali was closer to death than she was. In comparison, their little girl was bright and sparkly and full of life.
It seemed that every time I looked up I saw the mother of the little girl trying to catch my eye. I tried to plan my breaks and coffees for when they were busy so we wouldn’t accidentally meet in the corridor. I avoided making eye contact. I busied myself with keeping Zali as entertained as possible. I could see the mother’s need for support written all over her face. Perhaps she just wanted to talk with me about the intricacies of the illness. Whatever it was, she really wanted to make contact.
Contact with her would have ripped my heart out. There was so much suffering around me. I didn’t want to go into the details of how bad it was. I could see from the large cross on her necklace that she was religious. I didn’t want to talk about God’s plan. His plan sucked.
I could not offer one more iota than what I was giving already. My son was missing out on my support and having anxiety attacks as a result. Kala was missing out on Andrew’s support and was catching trains in the dark. There was nothing left to offer this other family, and carrying their burden would break us. Plus, Zali was now what they had to look forward to and it wasn’t pretty.
For two days I avoided contact with the family until they finally left to go back to the Variety Ward. I felt relieved that I had got my space back but was also aware that I had not met the social obligation that had been placed on me and that they would probably be disappointed I hadn’t offered to help. I was furious with the doctor who had pushed us into this unnecessary position.
Chapter 34
Thursday 16 July 2009, 75 days in hospital
28 days in PICU
The final insult from Dr X came two days after the disastrous extubation, when she decided that ketamine should be introduced to Zali as an alternative to the fentanyl drip she was on. We had no problem with Za being on fentanyl. We were completely aware of its addictive potential, but that was not an issue for us at all. The level of pain Za felt was cushioned only by this drug. She wasn’t groggy on it, and didn’t demand it. She was just herself, which to us was an indication that it was the right drug for her. Whenever someone had tried to wean her off it her pain levels went through the roof.
The doctor wrote scripts anyway and changed Za over to a ketamine drip. By lunchtime Za began to behave completely out of character. She was restless and irritated and itchy. She wriggled on the bed as if her back was itchy and started to flick at the tube and tapes on her face. She began to toss her head from side to side and scratch at her stomach.
I could distract her a little but not much. I was worried she was feeling pain, but it was impossible to tell. By the afternoon Zali was thrashing around the bed a lot. She had begun to tear at her thin skin, leaving deep gouges from one side of her chest to the other. Her skin was like tissue paper and everyone had been very careful to be gentle with it, and now she was tearing it apart. Her fingernails were cut very short so she couldn’t do any damage. Her hands were put into mittens, which were pinned to the bed so she couldn’t access her abdomen. As the night progressed she continued to be restless and began silent screaming as she thrashed her head around, causing a wound on the back of her bare skull.
The specialists all checked her. The nurses monitored her. Nobody could work out what was wrong although something was very wrong. She didn’t seem to be aware of us being around her. She was intent on whipping her head from side to side and wriggling on her back.
Theories about psychosomatic complications were thrown around, speculation about the disease reaching her brain was given, fevers investigated. Dr X came and observed once, but then was absent. Night fell and we left Za screaming, thrashing and delirious.
The next morning when we arrived, Amanda from the pain team was already in the room. This tiny powerhouse cared a lot about Zali, and I knew she would not let her be in pain if there was a way to avoid it. There was no need for a child to suffer. She assessed Zali and suggested that perhaps she was experiencing nerve pain. Nerve pain is especially difficult to treat. In fact, there is nothing that can be given to stop it when the nerves incorrectly get a message that they are feeling pain. If Zali did have nerve pain, changing back to fentanyl would not help. She said she would get her boss to come and have a look. He was a specialist in nerve pain, and he might suggest something that could help Za. If there was nothing to help then we may have to look at sedation options.
Zali was still thrashing about on the bed. Her heart rate, which had been steadily rising over the last two weeks, was dangerously high. Her respiration was high and her weight was dropping. She couldn’t afford to be expending so much energy, and it would greatly impede her recovery from LCH treatment if she continued like this. Za pulled hard on the mittens pinned to the bed and they broke free. Frantically she dragged her hands across her bleeding abdomen and cut new deep scratches into herself. Her hand was quickly restrained again and Amanda left hurriedly, telling me she would get help immediately.
It was very hard to see Za in such a state. The most difficult part was not that she was harming herself so badly. It was that she was so distressed that I couldn’t even feel she was connected to me. Her eyes bulged and went outwards in opposite directions. I didn’t think she could even see me. Every now and then she would calm down a little and stop screaming and I would talk softly to her, trying to keep her calm. She would listen intently to me but without understanding, like a crazy woman who is misinterpreting everythi
ng being said to her. Then she’d start thrashing about again. Her screams filled my head. Where my ears couldn’t hear her any more my mind made up the difference. I felt I could hear every murmur in full screaming stereo. We spent a lot of time taking breaks that day. We would sit with her for an hour, then go outside to the waiting room for ten minutes to sit in the silence and peace and then return for another two hours. I didn’t like abandoning her so much, but if I didn’t I would have become that screaming madwoman.
We had Chrissie the next day as a nurse. I liked Chrissie because she was like a doting aunt to Zali. She constantly read medical papers on LCH so she knew what she was dealing with. She did a lot of study for courses outside of her normal work and she was smart and astute. I trusted her to help us and to help Zali. I knew that when I had a break outside Za was in solid care.
When the doctor in charge of the pain team arrived just after lunch, Dr X who had been the one who changed Za’s pain relief came too. It seemed to me that she was seeking praise from a more senior doctor for her actions.
As the pain director entered the room with Amanda, Dr X started to talk to him about Za’s disease, the treatment and complications so far. It appeared to me that it didn’t matter to Dr X that we were in the room.
Amanda discussed with him Za’s history of pain relief and her experience with pain coming from various places attacked by the disease. He agreed that Za’s level of agitation could be caused by sudden nerve pain. If this was the case there was nothing she could be given to help relieve that pain. Sedation was the next choice.
When the doctors had finished their discussion, Chrissie politely but firmly piped up. The hierarchy of the room was: director of pain team at the top, doctor Amanda next, then Dr X, then Chrissie, us and Zali. It was out of place for Chrissie to offer her opinion on Zali’s treatment, but nurses are listened to by most doctors as they are at the front line of care and literally have their fingers on the pulse.
Saving Zali Page 15