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Where are my toes?
This was going to be an epic day. After two months of recovery, Megan was now free to go up to a ward and leave the intensive care unit. She was so excited to leave and held my hand as we pushed her in her hospital bed towards the lift. We were moving her to Ward Five in the children”s hospital in Bordeaux and about to start phase two of her recovery from a nasty attack of Meningitis.
As we pushed her into the lift, a young nurse joined us. I did not recognise her.
‘Hello, is this Megan?’ she smiled. ‘I was on duty the night she came in.’ Explaining we were on our way to ward five, the nurse became overjoyed, I could tell. It became clear during the ride in the lift, how proud she felt of my daughter for surviving this ordeal. Meningitis is a cruel disease she said as we let her off on another floor.
Leaving intensive care, I had mixed feelings. We had spent some of our worst moments in the waiting room, sitting on hard chairs, we had paced the corridors, witnessed the stress of other parents and their families and had said goodbye to the children who had not made it. I had sat outside with the doctor when we both needed some sunshine and a cigarette. He had asked me how I was coping as a parent.
‘It is important for us to understand,’ he had said. ‘You are vital in your child’s recovery.’ I understood what he meant.
‘The doctors are here to treat with medicine,’ he explained.
‘You are more than that,’ I replied. ‘I have put all my trust in you,’
I had worried that Megan would be traumatised in her brain whilst she was in a coma. She had a dream, she told me. ‘I was in a boat mummy, and the sea was all made of chocolate.‘
‘That is strange,’ the doctor said puffing on his cigarette, ‘because when she was in a coma, I would sing her a song about a boat.’
‘Why should that be strange?’ I quizzed him.
He carried on to tell me he had sung the song in his native Basque language. He was more than a doctor, the same as the young woman doctor who had met Megan the night she had arrived in the hospital and who went on to work 29 hours because she wanted to make sure my daughter was stable. We owe Megan’s life to them. These people are the angels we talk about. The people that take pride in their work, the souls who give more than they need to. I have forgotten the young doctor’s name, but I was grateful to him that he took the time to sing Megan a song whilst she was sleeping.
He had observed our tears of joy, in-between; hope – which hovered and mingled with our prayers and thoughts of positivity. He had been watching how we lifted Megan’s spirits to aid her recovery. He knew there was more at work here than just medicine. I had a lot of respect for him.
As we said goodbye to intensive care, little did we know that we would return here
Ward five was a breath of fresh air. We had a window and there was a play area. Megan could not walk because she had been on her back for two months. Her feet were still a grave concern and were bandaged. The main worry though was about her kidneys. The attack from meningitis had damaged her kidneys. They were working, but only 30%. She had to constantly drink water. I bought some bright coloured straws to encourage her to drink.
Ward five also saw my daughter gain strength in her mind and determination, Back came the devil child and some tantrums. Trying to wash her hair or give her a shower became a nightmare, I remember her throwing shampoo bottles at me, in fact, anything she could grab. When I left her in the evening she would defiantly shriek from her bed, sometimes even drag herself from it to crawl to her bedroom door and yell so the whole ward could hear her. The poor nurses would look on sympathetically. and in their broken English would justify Megan’s bad behaviour was because of her illness.
‘Oh no,’ I said adamantly, ‘This is normal, she was like this before she got ill. This is why she is a survivor. Her Dad would remark, ‘You need to be tougher with her’ But shouting at her was no way to help her. Megan was very angry, frustrated and confused. She needed to be reached with patience, cuddles and love.
You need a day off.’ the nurse suggested, and she was right. Megan was hard work and even her mum needed some respite in this scenario. The nurse promised she would cover for me. I did not want Megan left alone all day in her room. The children in the ward were not allowed to play with each other because of cross-contamination. Only if they were supervised in the play area by their parents. Some children were left alone for long periods, sometimes days. I took myself on the tram into Bordeaux ending up in the Disney shop buying gifts for my little girl. It made me feel good to get out of the hospital. It made me feel good to be in a normal world. The hospital felt more like a fantasy than wandering between displays of Peter Pan and Pochahontas. I purchased a diary with a picture of Tinkerbell on the front cover. Megan and I could write in it together. To record the progress of her recovery.
I suggested to the doctor it would be good to take Megan for a walk in the hospital garden. I wanted her to see the McDonald house where I was staying. She had been in a hospital room for nearly three months. Her daily routine was all focused on her illness and I felt she needed some distraction, some normality. ‘Unfortunately not yet.” her doctors told me adamantly. Megan needed to be eating properly. She was still being fed through a tube. I tried to explain to her the importance of eating. My four-year-old daughter looked at the plate of fish and white beans and flatly refused. “I don’t want to get better,” she shouted. I understood her. One night her dad sneaked in a Happy Meal. Ok, I know this is not supposed to be healthy but at least she tucked into some chicken nuggets. The doctors still would not let me take her outside.
Every Thursday, Megan would visit the operating theatre so they could examine her feet. Every week the surgeon would tell me, ‘C’est Bon!’ with a reassuring smile. I began to assume that her toes were repairing. On her last and final visit, I arrived to collect her to take her back to the ward. Instead, I was ushered into a small office to be told that Megan had been taken to intensive care. She had badly reacted to the anaesthetic and they thought she should be monitored over the weekend. She was fine now and I should not worry.
‘And her toes?’ I asked them
The surgeon said “C’est Bon, everything went well.” At least I could now stop worrying about her toes. I left the theatre to call her dad to tell him the bad and the good news.
The following Monday Megan was back in ward five. Her doctor was eager to dress Megan’s feet. Neither of us had seen them and I wanted to make sure I was there to distract Megan as they did it. We watched Charlie and the Chocolate Factory; her favourite film, as they started to remove her bandages. The look on the doctors face was disbelief. She looked over to me and mouthed the words, ‘I’m so sorry, I did not know.’ Seven of her toes had been amputated and the surgeon had not informed us. Her doctor, visually embarrassed, and annoyed quickly re-dressed her feet and called me outside the room. ‘I will get to the bottom of this, I promise you.’ she said.
A meeting was called between her surgeon, the doctor’s from intensive care, the doctor from ward five and her father and I were invited in. They were all very worried about legal implications, however, I could tell they were angry with the surgeon as they quizzed him. I remember saying that it was too late for Megan, ‘you cannot bring her toes back.’ Parents must be informed in advance and this situation must never happen again. They tried to say it must be a break down in communication and language, however, I made it clear that I understood perfectly what C’est Bon meant. Those were the only words given to me. Not once was I told they were going to amputate her toes. We now had to find a way of explaining to Megan where her toes had gone.
One good thing that did happen from that meeting was a statement by her ward doctor. Megan must be allowed to go outside.
The next day her tube was removed and I pushed her in a wheel chair. I was told not to go on the grass and not to go near the pigeons. Of course we ignored all the advice as I wheeled her over the grass and let her throw some bread to the pigeons. As I wheeled her back into the hospital she asked me if I could take her into the hospital shop. ‘And Mummy,’ she said with a big smile, ‘Can I have a sandwich?’
How do you tell a four year old child that she has lost her toes? Her father and I discussed this and were as nervous as hell. Surprisingly she took it reasonably well. We took her out of the hospital room and sat in the lounge of the McDonalds house. Megan sat on the floor playing with some toys.
‘Meg’s, you know how the tooth fairy comes to take your teeth?’ ‘Sometimes they come to take your toes if you are special.’
Megan carried on playing.
‘They have taken some of yours Megan, and they have left you some money.’
She looked up at us. ‘Where have they taken my toes?’
‘To a fairy garden somewhere so they can look after them.’
‘That is good’ she said. ‘So long as they have not thrown them away, how much money did they leave me?’
I felt mean as I handed her a five euro note. It was all I had in my purse.
Megan went back to playing with her toys as if to say, we can talk about this later..
It was harder to watch her come to terms with her losing her toes than it was dealing with her kidney function which was far more serious. I guess because we all thought having no toes would label her as being disabled. I soon came to realise that it was silly to think like that. Ok my daughter will never be able to wear flip flops or paint her toe nails but having no toes has not stopped her wanting to dance or do sports as she has grown up. Her kidney’s have left her with a problem. She will have to take medication for the rest of her life, maybe even face a kidney transplant.
Four months was a long time for a four-year-old child to be in hospital but her recovery did not end there. The day we left, the doctor admitted that on the day she arrived, they had given her only a 5% chance of survival. ‘She is an incredible child,’ I was told. ‘One of our greatest success stories.’ I wanted to make a gift to the hospital. You do not need to,’ replied the lovely young doctor from intensive care. My friends and I had collected some money and wanted to buy a sofa for the waiting room. Those hard chairs needed replacing. ‘It is for the parents,’ I said. ‘You know how important they are to their child’s recovery.’ ‘They need some comfort.’
Now we faced the task of getting Megan home, getting her walking again and learning to live with the after-effects of a disease that so nearly ended her life.
Megan has now reached the end of her teenage years, in October she will start her twenties. Her outlook is amazing. She wants to become a nurse and I am so proud of her.
Last year we were doing a lot of walking in the Uk where she is now studying. As we trekked along the coastal path over the cliffs of Dover, we looked across towards the faint outline of France. ‘I know this is a weird question’ I said to her, ‘But are you glad in anyway that you caught meningitas’
‘Damn right,’ she replied immediately, it defines my strength and who I am. Some people are never tested, I know I am a survivor, and that is a good thing, right?’
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