AMETHYST'S STORY | amethystsstory

Amethyst's Story

Amethyst Staff is a very normal happy little girl and always has been. Little did we know, there was something going on inside her which was just waiting to erupt.

Amethyst was born a very tiny baby, weighing only 5lb 12oz, and had slight digestive problems as a baby which we were assured would go. They did. She was absolutely fine up until she reached around 6 months. She started being sick at random times, and we couldnt link it with anything she had eaten or drank. We took her to the doctors and were told she just had a sickness bug and we should take her home, give her some calpol and see how she is in a couple of days. The sickness subsided so we thought no more about it.
A few weeks later it happened again, so we took her to the doctors and were told the same thing. This continued for about another 8 months, and despite our desperate pleas to the doctors to test further as we were convinced something was not right, nothing was done and they just continued to put it down to sickness.

Another few months later and Amethyst started to become wheezy whenever she did any kind of exercise, be it lots of walking/running/even laughing. And one Monday when we were at my parents she got progressively worse in a really short space of time. She could not talk properly and was gasping for breath, and she couldnt even make it half way down my parents reasonably sized garden. We called the out of hours as it was evening and got an appointment straight away. My parents looked after our then 3 year old and our then 5 month old, and off we went.

When we arrived we were told Amethyst had acute asthma, they put her on a nebuliser (an oxygen canister with a special inhaler attached, which the child has to breathe in for 5 minutes), prescribed her some antibiotics and steroids and sent us on our way.

When the same thing happened a few weeks later we took her back to the doctors and they did the same thing, but also gave her an inhaler to take home.

Then the sickness started again.

We took her back to the doctors, and were told to take her off of the antibiotics as this can make some children sick, but we were asked to keep her on the steroids.

The next day she was still being sick, so after some research by myself and my partner, we realised her symptoms were exactly the same as childrens acid reflux.

Still no better by the evening we took her to the out of hours, he confirmed what we had concluded and gave her some Gaviscon Infant.

The next morning (Sunday 12th August 2012), she did not run into our bedroom and jump on the bed as she usually did on the weekends with her brother, William. Worried that this was so out of character I got up and went into her room. I knew just then that it wasn't good. She was pale, grisly, and a little unresponsive. I took her into our room and when I put her down on our bed she cried.

We got the children downstairs for breakfast and after a mouthful of toast, Amethyst was sick, weak, limp and getting progressively more unresponsive.

I told my partner I had had enough and to call my parents so they could come and take our other 2 children, and we called a paramedic.

The paramedic, unhappy at what she had heard in our phone call, had brough the ambulance team with her anyway and within 20 minutes Amethyst and myself were on an Ambulance to the Norfolk and Norwich University Hospital (our local hospital.)

After a day of prodding and poking, tests, injections, monitors, and blood samples, they had come to the conclusion that Amethyst was DANGEROUSLY anaemic - A normal child of her age should have a level of 10-14, hers was 4, and as she had no apparent external lacerations, or bleeding, they were worried it was internal.

They checked everywhere and when nothing appeared, they knew it was a problem with her brain. They did a CT scan and found that she had several blood clots in her brain, but did not really know to what extent, as they are not a neurological hospital. Not happy with not knowing what to do, Amethysts' consultant, sent the scan pictures over to Addenbrookes' Hospital and within an hr they had gotten back to her, demanding that they get her to Addenbrookes' Intensive Care ASAP.

Amethyst was put under sedation for the journey and as she was having a blood transfusion in the ambulance on the way there, I was told that I could not travel with her. Hard enough to take as that was, we were then told that there was only a very slim chance she was going to even make the ambulance journey there.

Hearing this broke me, and I couldn't breathe.I just collapsed into Jay's arms and sobbed.

We arrived at Addenbrookes' - Selflessly brought by my dad, Amethysts' Grandad, at 10:40PM. When we were shown to P.I.C.U (Paediatric intensive care unit), we asked one of the night staff if there had been any word, she said no, not yet, but not to worry because they only phone ahead if it is bad news.

We waited in the Parent's room and 20 minutes later Amethyst and the ambulance team arrived.

We had to wait another hr and a half befor we could see her, while they plugged her up to all the machines, and linked her up to all her IV's and monitors and medication, and put her on a breathing machine.

They came through and got us about half an hr past midnight, and we went to see her.

It was horrific.

She was so still.

Lifeless.

Just the rythmic rising and falling of the breathing tube inhaling and exhaling for her.

She had that many wires and tubes, and cannulas going into her and a plaster keeping the breathing tube in her mouth, she was unrecongnisable.

She didn't look like our little Aimee-lou, just like a doll.

We spoke to the nurses and asked loads of questions, but at around 2 in the morning, unable to stay awake any longer, we faced the hardest decision of our lives and had to tear ourselves away from our fragile daughter, to be shown to our accomodation - Acorn House.

When we arrived there we went straight into the kitchen area to make a drink before bed, and in the kitchen were a tall man with hardly any hair, making a cup of tea, and a nice lady wit reddy coloured hair, sitting on one of the stools.

I looked a mess.

Without saying a word the man came over and gave me a hug.

They introduced themselves as Craig and Claire. They had been there a while, as their 3 year old son, Declan, had leukemia for the 2nd time. We stayed up chatting for ages, they were so selfless and kind and just let us talk, they didnt try and compete with how ill their son was at all, they genuinely wanted to help.

They told us that while we were there, we were welcome to talk to them any time, even if we just needed a cuddle.

It felt very sad but very relieving to have people there, who we could talk to, who had a child in intensive care.

We retired to our room, feeling, if possible, a little easier about the situation.

That night I couldn't sleep, despite being so exhausted, I must have rung the P.I.C.U 10 times, I think, via the internal phones that are linked, just to see how she was doing.

That morning by 7 am we were back at her bedside and were told the first day, she would be having all her tests done and they would look into booking an MRI scan.

The day passed as slow as an eternity, our families visited, as they had our other 2 children. Jays mum and dad "Nana Lyn and Grandad Scott" had our then 5 month old, and my mum and dad "Nanny and Grandad", had our 3 year old.

Once again at around midnight we tore ourselves away and resigned ourselves to our accomodation.

Day 3 on morning ward rounds, the consultants told us they had booked Amethysts MRI scan for 4:30pm that afternoon and that we would not get the results till the next day, which is also when they would decide on the best cause of action.

The following morning we were at Aimee's bedside bright and early. Once the doctors arrived they explained that she had substantial brain tissue damage, and she had Cerebral Venus Synapse Thrombosis - A blood clot in the main artery of her brain, allowing blood to be pumped to the brain but not out again. The condition, for under 5's, has a 50% death rate, however Amethyst's was significantly smaller as she had been left and untested for so long. The doctors told us they were going to put her on some antibiotics and a blood thinner to help to start breaking it down.

As for the brain tissue damage, this was irreversible. Nothing could be done to reverse it. The doctors told us that it was a large amount of damage and that it would definitely affect her, but it was impossible to tell how. And when asked "Will she remember who we are?" The doctor replied "I hope so."

2 more days passed of treatments and nothingness and on the afternoon of the 5th day they confirmed they were going to wake her up.

Now, you would think that would make any parent excited yes? No. I was terrified. I had gotten so used to her being asleep, and knowing she was comfortable and safe, that the thought of her having to breathe/and work for herself again terrified me.

That afternoon Jay and myself gathered round her bed, as they prepared themselves to turn the machines for the paralysis, sedation and morphine, and take the breathing tube out.

As they did everything slowly and in turn she started to twitch and move again, slowly at first, then more defined movements. When she had woken up a tiny bit they removed the breathing tube and she was fine. All she had was a raspy cough where the tube had been in, but other than that she was waking up well.

After a little while the doctors were then removing everything they had taken out, and we sat with Amethyst.

She turned to me and said "Want Mummy" and I couldnt stop crying, I leant down and gave her a massive cuddle - She remembered me :')

Jay was leaning over my shoulder and I whispered to Aimee "Do you remember who that is?" And she looked, smiled and grinned "Daddy!"

We both broke down in tears and couldnt believe that our tiny little girl, who was practically in a coma less than 3 hours later, was talking to us AND remembered who we were!!!

In the next hours I got to hold her for the first time, I was terrified, she still had a feeding tube and some wires in her, but we made it work. Jay fed her her favourite food for tea - Macaroni Cheese, the doctors came to do her eye/hearing tests and to take the bolt out of her head (which was there to monitor her brain pressure. She was very sleepy, so leaving her that night I knew it wasn't going to scare her.

The next morning (Friday 17th August) we arrived at her bed before she had woken up, and spent pretty much the whole day by her bedside, family came as they had done every day to see her, and us, and later that day we were moved out of the P.I.C.U and onto the Childrens Ward C3. It was bittersweet as we said our goodbyes to the team as they had become not only nurses, but friends, and companions.

Once Amethyst was feeling better and had had her feeding tube taken out, we took her back into P.I.C.U so the team could see her back to herself - well, pretty much - and they were over the moon.

The following wednesday we were transferred back to Norfolk and Norwich University hospital, where we were with her another week.

While we were there Jay had to stay back at home, however it meant he could be with the other 2 children.

It was only about 3 days and then we were allowed on day leave for the remaining 4.

Since being discharged, Amethyst has been tried on a 4 week dairy free diet, to see if that had contributed towards the anaemia, and to check whether she had a dairy allergy - there was no change. She was taken off of the Heparin injection twice a day (blood thinner) and put onto an oral one called Warfarin which she takes every day before bed, and will do for the next 6 months.

With the Warfarin, she has to go back to the hospital every week for fingerprick blood tests to make sure that the dose we are giving her isn't too high.

She is now getting stronger and back on her feet. To look at her you would never know there was anything wrong with her, and we are taking every day as it comes.

WE WOULD LIKE TO THANK ALL OF OUR FRIENDS AND FAMILY THAT SUPPORTED US AND HELPED OUT THROUGHOUT THIS HORRIFIC TIME, THE SICK CHILDRENS TRUST FOR MAKING IT POSSIBLE TO STAY WITH HER, AND ADDENBROOKES' P.I.C.U TEAM WHO SAVED HER LIFE. WE ARE ETERNALLY GREATFUL <3