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Sydney Harbour Hospital: Bella's Wishlist
Evie knew Bella was thin. Too thin. Her body mass index should be at least nineteen—although this would still only put her at the bottom end of normal. Evie knew it was difficult for Bella to put on weight, all cystic fibrosis sufferers had the same problem, but Bella should weigh five or six kilograms more than she currently did. Being underweight made it more difficult to fight infection and increased her chances of ending up back in hospital. Which was exactly what had happened.
‘Is your father coming in?’ Sam asked.
Evie shrugged. Sam’s guess was as good as anyone’s. ‘I’ve just tried to get in touch with him again. I’ve left two messages but I don’t know where he is.’
She kept one eye on Bella, wondering how she would react to the news that her father was uncontactable. Bella watched her, her grey eyes huge and pensive, but she didn’t look surprised. Evie supposed the news didn’t surprise any of them. ‘Lexi, do you have any other way of contacting him?’ Lexi worked with their father so it was possible she would know where to find him.
Lexi shook her head. ‘No, he was going out to dinner but it was private, not business related, so I don’t know any more details.’
Evie sighed. If Richard was out with one of his female ‘acquaintances’ it was highly unlikely that he’d answer his phone. It was also highly unlikely that he’d even make it home tonight, and if he did Evie wondered whether he’d even notice that Bella, and possibly Lexi, weren’t in their beds.
‘Do you think we need to try to find him?’ she asked. Was Sam telling them it was important for Richard to get into the hospital tonight or did they have some time up their sleeves?
Sam was shaking his head and Evie breathed a sigh of relief. He couldn’t think it was that urgent. ‘I just want to try to get Bella stabilised tonight,’ he said. ‘I’ll start a course of IV antibiotics and get her rehydrated. We’ll have to see how that goes but this is now her third admission this year. To be honest, things are heading downhill, but she’ll make it through the night. I’m sure your father will turn up eventually.’
Until then Evie would stay by Bella’s side. Even when Richard decided to join them Evie knew that she and Lexi would be Bella’s main support team. She wished things were different, for Bella’s sake, but their father and Bella had always had a difficult relationship, he’d never coped very well with his second daughter or her illness.
Evie’s own relationship with her father had been tainted by the departure of their mother. Something Evie held her father partially responsible for. She knew her mother had made her own choices but she felt that he could have been more supportive, offered more assistance, made more of an effort to convince her to stay. If he had, the bulk of the responsibility of raising her younger siblings wouldn’t have fallen to Evie and she would have had a very different childhood.
But the Lockheart family dynamics weren’t going to change overnight and once again Evie opted to set up a folding bed in Bella’s room. She sent Lexi home with Sam but she wasn’t going to leave Bella alone. She hoped Sam was right, she hoped Bella would make it through the night, but what if he was wrong? Doctors had been wrong before. She knew that better than anybody.
Bella had been awake since the crack of dawn, woken by the nurse who’d come in to take her six-o’clock obs, although in reality she felt as though she’d been awake most of the night. She always slept badly in hospital. Struggling for every breath ruined a good sleep, not to mention two-hourly obs and the fact she was always cold.
Evie had been by her side all night and she’d waited until Lexi arrived before disappearing in search of coffee while promising to be back in time for Sam’s early-morning consult.
Evie and Lexi were the two constants in Bella’s life. The two people she knew she would always be able to rely on. She knew she was lucky to have them and she’d given up waiting for her parents to give her the same support. But it didn’t stop her wishing that things were different. She didn’t like to be so dependent on her sisters but it was the way it had always been. She knew her illness was a strain on everybody but she also knew she wouldn’t cope without the love and support of her siblings. She wondered sometimes how they managed, especially Evie, who traded looking after Bella for looking after all her other patients at the hospital. Bella knew Evie had a shift in Emergency today but she had no idea how her sister would carry out such a demanding job after spending the night in a chair by her bed. She hoped Evie didn’t get any complicated cases.
‘I brought something to brighten your day,’ Evie said when she returned, carrying a tray of coffee and hot chocolate for her sisters. Bella felt her eyes widen in surprise; Evie wasn’t talking about the drinks.
‘Charlie Maxwell,’ Lexi said in greeting. ‘I’d recognise that bald head anywhere.’
Charlie Maxwell was in her room! Bella knew she was staring and she could hear the ‘beep beep’ of the heart-rate monitor attached to her chest escalate as her autonomic nervous system responded to his presence. Thank goodness he didn’t seem to notice. He wasn’t looking at her, his attention focussed on Lexi. Bella was used to that. People always noticed Lexi and Evie before they noticed her, and even though she wished, on the odd occasion, that someone would notice her first, today she was pleased to be ignored as it gave her time to try to get her nerves under control.
‘Morning, Lexi,’ Charlie said with a grin. ‘And for your information, I’m not bald,’ he protested. ‘I do this on purpose. It stops the women from being jealous of my golden locks.’
‘You’d have to be the only bloke I know who voluntarily shaves his head,’ Lexi retorted, before Evie interrupted them.
‘Bella, you remember Charlie, don’t you?’ she asked as she handed Bella a hot chocolate.
Who could forget him? Bella thought. She knew she never would, not in a million years. He looked as fit, healthy and fabulous as always. Charlie had been a professional surfer in a past life and he certainly had the body of an athlete. Muscular, tanned and perfectly proportioned, he was wearing a white shirt and Bella could see the definition of his biceps and pectoral muscles through the thin fabric. She swallowed hard as she tried to get her mouth to work but she was short of breath and her mouth was dry and parched. Unable to form any words, she nodded instead.
‘Ciao, Bella,’ Charlie said.
He always greeted her in the same way and it never failed to make her feel special, even though she didn’t flatter herself that she was the only one on the receiving end of his charm. But therein lay even more of his appeal. He was one of the few people who didn’t treat her any differently because of her medical condition. He was a serial flirt and he gave her the same attention he gave to every woman who crossed his path, and to Bella, who was used to either being shielded or ignored, Charlie’s attention was a rare delight.
He winked at her and her heart rate jumped again. She felt herself blush and cursed her fair skin.
‘How are you feeling?’ he asked.
‘I’ve had better days,’ she said, finally managing to get some words out. But it wasn’t the cystic fibrosis making her short of breath, it was Charlie. She was always shy around anyone other than family and even though Charlie behaved like family he was so damn sexy she’d never managed to overcome her self-consciousness around him, especially when other people were within earshot. One on one she was more comfortable but with other ears around she always worried about making a fool of herself.
He was gorgeous and she always felt so plain by comparison. His facial features combined so perfectly together she’d never really noticed that he shaved his head. Of course she’d noticed he was bald but she’d never wondered about the reality behind it, she was too busy being mesmerised by his other physical attributes—his chocolate-brown eyes that she felt she could melt into, his smooth, tanned skin, which provided the perfect foil for straight, white teeth, even his small, neat ears all combined into an appealing package. But his best feature was his mouth. She could visualise him with sun-bleached surfie hair but it was irrelevant really because her attention was constantly drawn to his lips. They were plump and delicious, full but not hard like a collagen-injected pout, they were juicy and soft, almost too soft for such a masculine face. He was smiling at her, a gorgeous smile, full and open and honest. You’d have to be dead not to be affected by his smile and while she wasn’t feeling anywhere near one hundred per cent healthy, she wasn’t dead yet.
‘So Evie tells me,’ Charlie replied, ‘but if there’s anything you need, just ask me. I know how to make things happen around here.’
He winked at her again and Bella didn’t doubt for one minute that Charlie could get whatever he wanted both inside the hospital and out. She knew his reputation as a charmer, she’d heard the nurses talk about him during her numerous admissions, and she knew they competed for his affections and attentions. The combination of his wicked sense of humour, his infectious smile, his gentle nature and his hardened muscles had the female staff members regularly flustered, and Bella herself was no exception.
As far as she knew, only Evie seemed immune to Charlie’s charm. Their ten-year friendship had only ever been platonic and for that Bella was grateful. It meant she was free to adore him without feeling as if she was invading her sister’s territory. She knew that from the day Evie had first met Charlie she’d thought of him as the older brother she wished she’d had. But Bella’s thoughts towards Charlie were far from familial—although she’d never be brave enough to flirt with him, she knew she wasn’t experienced enough to handle Charlie Maxwell. So she just nodded dumbly in reply. She’d lost the capacity to speak again, completely tongue-tied at the thought of Charlie doing things for her. Fortunately Sam’s arrival saved her from needing to answer. He was followed by a nurse and a couple of interns and suddenly her room was overflowing with people.
A ninth person came into the room and Bella saw Evie’s double-take. It was their father.
Bella had assumed Evie had gotten in touch with him during the night, or vice versa, but looking at Evie’s expression now it was obvious she’d heard nothing back and hadn’t been expecting him.
He looked tired and drawn. Bella wished she could pretend he’d lost sleep worrying about her, his middle daughter, but she knew it was far more likely to be a result of a late night of a different kind. She waited for her father to push through the crowd gathered at the foot of her bed but of course he didn’t. He remained standing just inside the doorway, separate and apart from his family. She sighed, wishing for the thousandth time that things were different. At least he was here, which was more than Bella could say for her mother. She nodded in greeting and then proceeded to ignore him as her sisters took up positions on the bed on either side of her. She was tired of always being the one who reached out to make a connection with her father.
Evie took her hand and Bella relaxed, knowing her sisters would try to protect her from harm. Bella saw Sam acknowledge Richard’s arrival with a nod of his own before he began his consult. He checked Bella’s vital signs, checked her obs, listened to her chest and generally prodded and poked while she tried to pretend she wasn’t surrounded by people. The procedure was familiar to her but that didn’t make it any less embarrassing. Once he’d finished he spoke to Bella as though they were the only two in the room.
‘You’ve lost weight since I last examined you, that’s not what we were hoping for, your admissions are getting more frequent and your lung function tests are down.’ Sam was ticking things off on his fingers as he recited the list.
‘Is there any good news?’ Bella asked hopefully.
‘One positive note is that you’ve made some improvement overnight. You’ve rehydrated and your temperature has come down but it’s still higher than I’d like. You’re showing some resistance to the antibiotics and I’ve had to increase the dosage to try to get your chest infection under control. Individually all these things are not so concerning but combined it means I need to reassess your management.’ He paused briefly and Bella knew what he would say next. ‘It’s time for the next stage.’
Bella couldn’t speak. This wasn’t unexpected but she didn’t know what to say. Sam was watching her, waiting for her to acknowledge his words, and she thought she nodded in response but she couldn’t be sure.
Sam looked away from her now, turning to the members of her family, stopping briefly at each and every one as he spoke. ‘I know we’ve talked about this before but the time has come. Bella needs a lung transplant now. She is already on the active transplant list but I have revised her status. This will move her up the list and means she will get the next pair of suitable lungs.’
Bella tightened her grip on Evie’s hand. This was really happening. During her last hospital admission Sam had told her she would need a transplant eventually. That was the way things went with cystic fibrosis. But eventually had become now. Her lungs were officially failing.
Out of the corner of her eye she saw Richard collapse into a chair as though his legs would no longer support him. His response surprised her. Her father was a man of action, he always had a solution for everything, a way to deal with everything—except when it came to her and her mother—but he never normally showed any sign of weakness. Was he actually concerned for her? Bella knew there was nothing he could do for her now but she couldn’t ever recall seeing him flummoxed. Was he concerned or was he confused?
‘What do we do while we wait?’ Lexi’s voice was unexpectedly loud in her ear and Bella jumped.
‘In the meantime, we start the pre-op processes. Physical tests, including blood work and organ function tests, as well as psych assessments,’ Sam replied.
‘What does the surgery involve?’ Richard asked, and his question answered Bella’s own. His tone said this was a question from a man who wanted information and clarification, not a question from a concerned father.
‘Obviously it is major surgery. Bella will be several hours in Theatre. It can take up to twelve hours. She will be placed on a heart bypass machine while both lungs are transplanted via an incision across the bottom of the diaphragm, then she will be transferred to ICU for at least twenty-four hours and then back to the cardiothoracic surgical ward.’
‘What are the survival rates?’ As was his style her father was keeping any emotion out of the equation. He preferred to deal with the facts and figures.
‘The figures are good. Currently eighty-five per cent of people undergoing bilateral, sequential lung transplants in Australia survive one year and sixty per cent are still alive after five years.’
Bella heard a sharp intake of breath. For a moment she thought she’d made the sound but then she realised it had come from Lexi.
Bella knew the odds. She’d lived and breathed them since her last admission. She knew the statistics were good, for the short term at least, but she also knew that to those who hadn’t spent countless hours doing the research she’d done, the odds didn’t sound that fantastic.
‘These stats are not just for CF sufferers,’ Sam clarified. ‘They’re for everybody and Bella has age on her side. Although she will still have cystic fibrosis, it won’t be in her lungs.’ Sam looked directly at Bella. ‘If your lungs are functioning properly, you should notice a far improved quality of life. You’ll have more energy, you should gain weight and you’ll be able to be more active.’
‘What do you mean, she’ll still have CF?’ Richard was frowning.
‘Bella’s lungs will be clear but she will still have CF in her pancreas, sweat glands and reproductive tract. She will still need her enzyme-replacement medication and she will start a course of anti-rejection medication. The transplant is not a cure for the disease, it just eliminates the disease from her lungs, and will hopefully extend her life.’ Sam turned to face her. ‘Bella, do you have any questions?’
She still hadn’t uttered a word.
‘How long do I have?’
‘A month, maybe two.’ Sam’s voice was deep and soft but his words were clear and distinct in the absolute silence of the room.
It was already November. Would she see another Christmas?
‘What choice do I have?’
Her question put an immediate and definite end to the silence. Lexi started to cry and Evie started to reason with Bella. They both knew her choices were limited.
Bella held up one hand, asking Evie to wait. ‘It was just a question,’ she said. ‘I didn’t say I won’t have a trans plant, I just wanted to hear if I have any other options.’
‘Of course you have a choice,’ Sam said, ‘it’s your body. You can choose to have a transplant if we find a suitable donor or you can choose not to. But you don’t have any other options.’ He spoke to her as though they were alone in the room. ‘It’s a big decision and I know how daunting this can be but ultimately I wouldn’t expect you to find it a hard decision to make. The consequences of your decision are self-evident. You’re free to talk to the psychologists and the transplant team in more detail, you can ask them anything you want or need to know, but you don’t have a lot of time to decide. Your lungs are failing. Without a transplant you’re on borrowed time.’
Borrowed time. She knew that but it made it more important than ever that she get things sorted. There were things she needed to do. She had to prioritise. She needed to think. She closed her eyes. As she’d hoped, Sam took that as a sign to usher everyone out of the room.
‘Okay,’ he said, ‘I need to run a couple more tests and Bella needs to rest. You can come back later.’
Bella thought Lexi was going to argue but she saw her look at Sam before she said anything. Sam gave a slight shake of his head and Lexi stayed quiet. The medical team was leaving the room and Lexi and Evie kissed Bella before they followed. Charlie and Sam were the last ones remaining. Bella looked from one to the other. Charlie was wedged in next to the bathroom doorhandle, he would have to wait until everyone else had left before he’d be able to get out. She needed to ask a favour and if she was running out of time she needed to do it soon. It looked as if Charlie or Sam were her only options. Not that they were bad options. This was a topic she couldn’t discuss with her sisters; she’d tried already and failed, but by the same token she didn’t think it was something to discuss with Sam either.
Bella needed a sounding board. Charlie had offered his help and even though she knew this wasn’t exactly what he’d pictured, perhaps he wouldn’t mind. After all, this concerned Evie and he knew her better than most.
Bella hadn’t seen Charlie for some time. He had been a frequent visitor to the Lockheart home but since Evie had moved out into an apartment there was no reason for Charlie to drop by. But she knew from experience that Charlie was a good listener and he could be relied upon for level-headed advice. She and Charlie had a history of heart-to-hearts, albeit a very short one, and perhaps he could help her again.
Besides, she was running out of time and options. He would have to do.
‘Charlie, could I talk to you for a second?’ she asked. She knew he saw himself as family, maybe he could do this for her.
Bella saw Evie glance back over her shoulder as she left the room. She’d be wondering what on earth Bella needed to talk to Charlie about, wondering why she wasn’t talking to her, but Bella knew this was one thing Evie couldn’t help her with.
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