Daily Archives: February 12, 2020
How Do You Say Goodbye?
The consultant met with us literally straight away as we reached GOSH and gave us directions to go to see the optician, he told us it was important to check her eyes. Everything was moving so fast, the optician was rather annoyed and her outburst made us pretty anxious even more… ‘How can this be unnoticed, how could your gp not see this?’ the vessels behind Nadias eyes were dangerously swollen which apparently with this condition could cause irreversible blindness. Each minute that passed seemed to come with another bombshell. From a low-key day of supposedly migraines and vomiting to full explosion of a life – threatening condition, it was too much.
Back by her bedside the consultant came into see Ken and I, the children were with the play assistant. ‘Well Mr & Mrs Sajor, I’m sure by now you realise we are dealing with a very sick little girl here. I am so very sorry it has taken so long to detect, but as you can see it is a very difficult condition to diagnose without the use of a scan. Going forward we need to operate as soon as possible and there are two options for you to choose.’ Us to choose??, I wasn’t sure Ken was in any fit state to make an informed decision, he was so devastated and was in tears every time we spoke to a health professional. ‘They both come with risks, one is that we place a VP shunt in her brain and run a tube to her abdomen where the excess fluid is absorbed by her body. The problem is that it will be life long, it may get infected and break, cause her ventricles to collapse or brain haemorrhage. There is a possibility for symptoms of hydrocephalus to return.
The other is to perform a ventriloscope, putting a hole in the third ventricle. The risks are in surgery where the procedure can cause memory loss, problems with speech, balance and vision or a bleed in the brain, it can cause death. On the positive side, if it is successful then she will need no further treatment unlike the shunt. Do you understand? Which one would you want us to perform?’ ‘what do you mean? Surly you can’t put that us? One has a risk to her life after the operation and life long and the other has a risk to life during the operation yet no further problems. I can’t I CAN’T CHOOSE… What would you do, as a professional, you have performed this procedure before, if this was your child what would you choose?’ There was a silence and he sighed ‘If it was my choice I would choose the ventriloscope’ ‘So be it then, do that.’ Ken sat in silence, thick solid silence and fresh tears fell effortlessly down his face. All I could do was hold him in my arms whilst he rested his head on my chest.
The operation was scheduled for the next day. A paediatric nurse came and explained to Nadia about the water in her brain that had a blocked lane and they had to find a way to drain it out for her by making another little hole for it to drain out of to make her better. She understood and wasn’t scared in the slightest. She also explained about the needle that would be used to administer the magic liquid that would put into a deep sleep like sleeping beauty. To do this operation she would have a quarter of her hair at the front shaved off but was assured that her hair would grow back. My goodness what was really happening, how can this be happening?
They came and got Nadia around eleven and Ken and I walked alongside her bed as she was wheeled to theatre. She was such a good girl and nothing phased her. She was prepped and we were allowed to give her hugs and kisses. The anaesthetist began to inject the anaesthetic and counting backwards from ten, Nadia reached seven and she was gone and that was when the tables turned, I broke down and sobbed and Ken with all his strength held me up.
It was four long hours and in that time we paced, we sat, we went for a walk, we ate a little but truly had no appetite. I was so scared, watching Nadia slip under the anaesthetic was like watching her slip away from our lives. Knowing something could go terribly wrong in the operation, even death, was haunting.
The relief of hearing all went well when the surgeon came out filled us with jubilation. There was also no tumour. It will always be a mystery why Nads got this condition. Probably born with it and remained undetected due to it not being a problem, who knows. She was in recovery and would be out shortly. Ken and I breathed a sigh of relief.
Nads stayed in hospital for a further two weeks and befriended a girl called Melisa who was thirteen years old. She was in to change her shunt and had some other complications with her heart. Melisa lived in Southend near the coast and her parents decided to leave one evening to go and refresh themselves, change their clothes and collect some things for Mel. They left about six in the evening and was planning to come back in the morning. Melisa was a little rude to her parents and snappy before they left, but they seemed to overlook her tantrums. She was an only child and very sick. Ken and I got chatting to her parents and they were a lovely couple.
A little over an hour after they left Melisa was uncomfortable and wanted her bed adjusted. The play assistant came in and tried to operate the bed but it was jammed. After another pull the bed jolted and Melisa cried out that something hurt her chest, the play assistant was so apologetic but Melisa burst into tears and wouldn’t stop. We called for the nurse and before you knew it there was a big commotion around her bed. A portable xray machine was bought in and all the patients and parents were asked to leave the ward and wait in the playroom.
You could hear Melisa screaming in pain and crying ‘it hurts it hurts’ then there was silence, an eerie silence. I peeped around the door and the curtain was still around Melisa’s bed, the play assistant was so tearful as she felt so guilty. After a while the ward nurse asked the parents to come with her to the next room. She turned to us ‘I’m awfully sorry that you have been put out of the ward, we will get you back in as soon as possible, we’ve just lost Melisa.’
I think nearly all the parents grasped in shock, we just heard her screaming and crying, how could she be dead? It was most upsetting and it was agreed that a specialist nurse break the news to the children. Melisa’s bed was opposite Nadias and they had played well together. I couldn’t stop thinking of Melisa’s poor parents. They hadn’t reached Southend yet and were uncontactable. As soon as they’d arrive home, they would have to turn and come right back to such unthinkable bad news. To think the last conversation was there daughter shouting at them to go away. Tears hit my eyes.
Melisa’s parents broke down and was quite distraught when they came to see us after seeing the medical team. They hugged the play assistant and reassured her it wasn’t her and not to carry any guilt. They said Melisa had complications and her shunt had broken and there was nothing they could do. At that point I was relieved we opted for the ventriloscope after seeing a little girl of thirteen die. Parents hugged and comforted their children I thought to myself its not good to say goodbye angrily or say mean things as you may never see that person again to say sorry, I love you.
It was a very emotional couple of days, and it was now time for Nadia to leave. The boys really missed her and were very excited at her coming home, we all were.
Our little girl was safe and out the woods. After a couple of weeks I was ready to g back to work and Nadia to school. Her hair was starting to grow back and as it shaded her scalp it didn’t look too bad.
Susan and the staff team welcomed me back, all relieved of Nadias recovery. It was coming up to pay day and I couldn’t wait, staying in GOSH proved quite expensive with Kens train fares, petrol and parking meter money, lunches and dinners, over the weeks was not obviously part of our budget.
A couple days before the end of the month, Susan asked to see me. ‘Hey Maria, how you settling in? look I’m sorry to have to tell you but you wasn’t given sick pay.’ I was dumbfounded,’ but Susan you said take as much time off to be with Nadia we got you covered, I don’t understand what’s going on? Susan looked down, she couldn’t look in my face. Apparently because Nadia hadn’t died, I was not eligible for compassionate pay and something else, I stopped listening and all I could hear were my own thoughts, what about the bills and responsibilities?? In a panic I applied for an overdraft which thankfully I got but slowly became a noose around our necks.