Friday 13th at the GP

I had managed to sleep for a short while because I was exhausted and I could see that Evelyn’s condition was improving.  Her temperature came back to normal although she was lethargic and pale.

Our neighbour took our son to school and I sat with Evelyn.  She wanted to come downstairs so I made her comfortable on the sofa with pillows and a light blanket and I put a bowl next to her as she had been slightly sick a number of times

I don’t know what time it was when I started to feel concerned again.  I do know that her temperature started to rise again and that her breathing seemed more laboured again.  When T arrived home from work  after 2pm, we decided that Evelyn needed to see a doctor so that we knew whether she needed to go back to hospital.  I phoned the GP surgery and was told that a doctor would phone me back.

A few minutes later the phone rang.  I explained the history and he told me to bring her to the surgery straight away.  T set off on foot for school to collect our son and I put Evelyn’s shoes and socks on and put a coat over her night dress.

We set off in the car with the hospital vomit bowl on her lap and she sat in the front passenger seat.  We drove passed T who was walking quickly to get to school.  With a very croaky voice, she said “I love my Dad”. It was one of the last things that she ever said.

We arrived in the ridiculously small car park and I reversed into the only available space.  I quickly got out and opened the passenger door to help Evelyn in the confined space.  As she got out, a wasp appeared from nowhere and stung her thigh before I could even react.  It was the last thing she needed and I hadn’t brought my  bag which contained antihistamine cream in a first aid kit.  The wasp had landed on her skin because she was wearing her nightie.

I held her hand and we went straight to the reception desk.  I think that the automated booking was out of order and anyway, I was now in a real hurry to get some help.  The receptionist was having a problem with the computer and it seemed to take an age before we were sent to the waiting area.  We sat outside the doctor’s room and waited.

Dr M that I know as a parent from school, walked through the waiting area and so I spoke to her and asked for something for the sting.  I wasn’t worried about a reaction to the sting, but more that it was hurting her and she was already feeling very poorly.  I explained that we were waiting for an urgent appointment with doctor H.  She checked the sting and went to see the nurse about antihistamine.  When she came back, she said that they only had treatment for anaphylactic shock.  The sting was already looking better and so she went to her consulting room and shut the door.

Evelyn began to cough with the distinctive bark of croup.  Dr M heard and immediately came out.  She offered to see Evelyn, rather than wait for doctor H.

I explained the history and she examined Evelyn.  She decided to administer Salbutomol and so we went into a treatment room and one of the practice nurses joined us.  Whilst Evelyn was inhaling the Salutomol through the mask, the doctor went to look at the computer.  She said that she had used the croup scoring method and that Evelyn had moderate croup, score 5.  She said that it it usually over in  3 nights and so I could expect one more poor night’s sleep.  She could not see anything that the antibiotics could have been working on as there was no sign of tonsillitis, although I said that I would carry on giving them until the course was complete and she agreed that this was the right thing to do.

She asked me about the medication in A and E and said that she could not prescribe Dexamethazone, but could prescribe Prednisilone.  I remember that it was a surprisingly large dose (think 4 tablets dissolved in water) so I made sure that I listened carefully to the instructions.

She asked if I knew any of the other GPs because she thought that Evelyn should be checked after the weekend.  She invited another doctor in and gave him the background.  They both advised me about what to do if Evelyn became worse and that I should use steam to ease the symptoms.

Evelyn tried to speak, once the nebuliser mask was removed, because she knew the doctor from when I had an appointment.  She said “he is the funny one” but he could not understand what she said because she had lost her voice.  I explained to him and then helped Evelyn down off the high bed.

We went back to the car and set off for home.  I decided to drop her off with T and then go straight to the big pharmacy on the retail park so that I could park outside and run in to get the Prednisilone.

I didn’t know that she had about one hour to live

Thursday and the nurse

When we arrived home from A and E sometime around 5/ 5.30 am, I made Evelyn comfortable on the spare double bed so that I could lie next to her.  She wasn’t comfortable lying flat, so I used several pillows to keep her propped up.

I explained to Trevor that I had been told that Evelyn had croup and that she had been given a steroid.  I don’t remember saying this, but Trevor recalled it clearly, that I was not convinced about the doctor and that she seemed rather unsure of herself.  This is certainly what I was thinking and I was very dubious about this being just a viral infection.  However, I also recognised that I had never seen croup before.  At that stage, I did not know that there was such a thing as Bacterial Tracheitis.

I lay down on the bed next to Evelyn and remained awake until I got up to get Ed ready to go to school.  I sent a text to my neighbour C, to ask if she could take him with her daughter who was at the same school.

I went back upstairs and lay on the bed, but could not sleep as I was worried about Evelyn.  I can still picture her lying on her side, facing away from me and propped up with pillows, her little frame dressed in a pretty nightie with her beautiful curls.

I don’t know how long she slept for, but she woke and wanted to go downstairs.  I made her comfortable on the sofa with light blankets, pillows and her favourite soft toys.  I monitored her temperature over the next few hours and recorded doses of Ibuprofen and Paracetamol.  In the afternoon, I felt at a loss because her temperature was sky high, despite alternate doses of Ibuprofen and Paracetamol.

I phoned our GP practice and waited for the doctor to return my call.  I find this part of the story painful to relate because for months afterwards I had the crazy idea that perhaps I had not given the doctor the important information.  When I finally obtained the records, however, it is documented exactly as I had recalled.

I told the doctor that I had taken her to A and E at 2 am because she was struggling to breathe and had burst into our room . She had been diagnosed and treated for croup and discharged home.  Her temperature was still hovering around 40 degrees, with the lowest that day 39.6.  I was not convinced that she had got only a virus and I wondered whether she might have a secondary bacterial infection such as tonsillitis.  The record says “Mum wondered re antibiotics.”

She asked about whether her breathing had improved.  I was unsure, although I said that it was clearly better than when she had a severe problem at 2 am.  I said that she was very poorly with a high temperature and she was feeling sick.  The doctor said that a high temperature was nothing to worry about in a child of Evelyn’s age (7  3/4) because she was not at risk from febrile convulsions and it showed that her body was fighting infection.

She said that she had made an appointment with the nurse practitioner for later that afternoon.  I was stunned for a moment.  I thought that the information I had given her would have triggered either an appointment with a doctor or instruction to return to A and E.  She evidently sensed my surprise when I just said “oh!”, but she reassured me that the nurse was qualified to administer antibiotics and that she was very experienced.  I knew the nurse and I thought that she will have seen thousands of kids with croup in her career and would know if there was anything to worry about.

I arranged for Ed to be collected from school by my neighbour and went to the surgery with Evelyn.  She looked white and really poorly and I can picture her sat in the chair in the reception area whilst I booked her in.  We we seen very quickly and the nurse took Evelyn’s temperature.  I explained that she had been in A and E this morning and diagnosed with croup and administered with Dexamethazone.  I explained that I was giving Ibuprofen and paracetamol and yet her temperature was really high.  She measured 40.1 degrees.  She looked down Evelyn’s throat and declared that the tonsils were covered in white spots (exudate) and that she needed penicillin.  I was surprised because I could not see anything other than a bit of swelling, but I supposed that she had the benefit of a spatula and powerful light to get a better view.  Later, I found out that this was an extremely  dangerous thing to do, butting a spatula into the throat of a child with croup.

I felt massively relieved when she produced an prescription for penicillin.  We went straight to the pharmacy to collect it and I gave her a dose immediately.  I could give her a dose again before bed and I would set my alarm to give a third dose early in the morning.  Hopefully, it would kick in soon and she would improve.

Even after the first dose she seemed happier.  Perhaps it was partly the fact that she knew that she had the medication to make her better.  That evening, we continued with the paracetamol and Ibuprofen and I added the antibiotics to my record sheet.  I left Trevor at home with the kids whilst I popped to the school for the curriculum evening for our son’s year group.  It was only an hour and I hurried home.  After antibiotics and ibuprofen, I took Evelyn to bed and lay next to her.  I did not get any sleep until the early hours, when her breathing gradually became less noisy and her temperature was falling.  I thought that everything was going to be OK and by now I was exhausted, having little sleep for two nights in a row.

 

Back to School and Work September 2013

In September 2013, Evelyn started year 3 at her primary school.  Our summer holiday had been wonderful, with a week in Cyprus and plenty of time with family and friends.

I was fortunate in that I had landed a good job as a contract engineer , two years earlier, and it allowed me the kind of flexibility that meant that I could look after my children and work while they were at school.  It was hard going, but I didn’t want it any other way because I wanted to be with my kids as much as possible.

The extra income meant that we could now afford a better quality of life and things were looking good for the four of us.  We had one boy and one girl and we were all healthy and happy.  We did not have any financial worries.  We had both suffered the loss of a parent, but that is something that most people face at some time.

We started week 2 of the term in the usual way.  I drove to school each morning and made sure that they were safely in the classroom, before driving the 10 miles to work, where I struggled to find parking and then would rush to my desk and log on whilst I made a coffee.  I would return to school to pick them up, after being sat in front of my two computer screens for five hours.  Fridays were sometimes different because I could ask my husband to pick them up so that I could catch up on my work.

On Wednesday, September 11th, we had arrived at school when Evelyn  said that she had a bit of a headache.  I had a sachet of children’s Ibuprofen in my bag, so I gave it to her and she seemed fine by the time she went in.  I explained to the teacher and said that I could be contacted at any time during the day if she became unwell.

I returned to school at the normal time and Evelyn said that her headache was coming back but the most noticeable thing was that her voice was very hoarse.  She said that her throat was sore.  She seemed fine again after some Paracetamol and she insisted that she wanted to go to her ballet class.  She didn’t eat much tea, but I took her to the class as she never missed it.  My friends noticed that her voice sounded very strange, but I said that I would be taking her to the doctor in the morning because it might develop into a nasty infection

I put her to bed with a dose of Ibuprofen, just in case her head hurt again and told my husband to let my department know that I would not be at work in the morning (We both worked on the same site).  I had no idea about what would happen next.Photo0545

 

Friday 13th The end of my world

When we arrived home, I opened the front door and called my husband to help.  I asked him to find the antihistamine cream in my bag in the hall and put it on Evelyn’s sting.

In a few seconds I was back in the car and I set off through the busy traffic.  I went to the Pharmacy counter in Boots and I said “this is urgent”.

They were very quick and I returned home.  T dissolved the tablets as instructed and I reassured him that the quantity was correct.

I sat with Evelyn after she had taken the medication.  She needed to spit into a bowl because she felt sick.

I cannot give the full detail of what happened next and there is no need to.  The timeline is important though.

About 16.40 Evelyn suddenly struggled to breathe

T ran out of the front door to see if he could get our neighbour who is a paediatrician

Evelyn and I walked towards the front door

T heard me scream out that we needed an ambulance.

Our 9 year old son dialled 999 and Evelyn collapsed in the hall

T took the phone and I was already trying to resuscitate

The ambulance arrived and I saw a reflection of blue light on the wall.

The ambulance man said “keep going, you are doing great”

Couple of seconds later, she was placed in the ambulance

An air ambulance was overhead

I travelled in the front of the ambulance to A and E

I fought to stay conscious and to keep breathing

I knew she was dead

 

 

A and E

02:00 Thursday morning.  I was in a deep sleep when the bedroom door opened suddenly.  We always kept the landing light on at night and so she appeared as a silhouette against the bright light, until my eyes adjusted.  She had her hand on her throat and said, in a very husky voice, “I can’t breathe properly.”

I leapt out of bed, pulled a dress on and led her downstairs.  I gave her a drink of water and a Paracetamol Melt, and she seemed a bit better.   Whatever had caused the obstruction must have moved.  My husband and son were still in bed, so I told my husband that I was taking Evelyn to A and E.  She sat in the front seat so that I could see her at all times and I drove to A and E.  The roads were deserted and so we arrived by 2.15am.   I remember feeling a sense of relief when we arrived there because I had been frightened by her sudden inability to breathe and I was worried that it might happen again.

I parked a few yards from the entrance and we walked to the front desk.  I wish now that I had carried her, it might have made them take her condition more seriously.  But she was a relatively tall child who was a couple of months away from her eighth birthday.  She was going to be much taller than me in a few years’ time.

I explained that she had woken a few minutes earlier, struggling to breathe.  The woman at the reception desk asked Evelyn questions about her age and name, but she couldn’t really speak  because of her croaky voice. The woman commented that they had had a couple of cases already that night and said that it was croup. The waiting room was deserted.

As soon as the details and history were taken, the triage nurse opened a door and told us to come straight through. What I had not realised was that Evelyn’s temperature was over 40oC. I believe that she said 40.8, although she wrote 40.2.  I have seen her develop temperatures of over 40 before and I remember being extremely concerned, which is why I suspect that it was higher than 40.2.  Either way, this was a significant fever and, combined with the sudden severe breathing difficulty, was very worrying.

She led us from the examination room, through the main A and E department, into the children’s waiting room.  I had already given her a Paracetamol melt and so the nurse weighed her to establish what dose of ibuprofen could be given.  Soon afterwards, a second nurse came into the children’s area, and I remember the two of them having a discussion about whether the scales were working properly.  One of them went to get a portable set to confirm that the reading was correct.  I remember thinking how odd it was that in my own profession of engineering, we carefully calibrate all measuring equipment, yet when the equipment is important for life or death, it seems not to matter.  It was a good thing that it was such a quite night.

The children’s area was deserted, so Evelyn lay down across the seats.  I remember that I rolled up an item of clothing to give her a pillow and I can picture her lying there because I could see that it can’t have been very comfortable because the design of the chairs meant that there was a gap between each seat.  The second nurse took Evelyn’s measurements, including respiratory rate, oxygen saturations and heart rate.  She commented on the rapid heart rate and I asked if that was normal.  She said that it was normal with a high fever and therefore nothing to worry about.  At this time, the respiratory rate and oxygen saturations were within acceptable levels. Evelyn looked very pale and unwell.

At some point, I remember taking Evelyn to the toilet which was immediately next to where she lay on the chairs.  I must have taken a urine sample from her because I have seen that a sample was tested and showed no abnormalities.  The nurse brought a dose of Ibuprofen which I recall her saying was a 9ml dose because they had weighed her, as opposed to the 5ml that I would normally be able to give at home.

The doctor that came to examine Evelyn was a young woman.  She came into the children’s area and asked us to come into one of the examination rooms.  She was very pleasant and examined Evelyn once she had got her sat on the bed.  I gave the doctor a full account of exactly what had happened when Evelyn had burst into our room at 2am, struggling to breathe, and the history of developing a sore throat and very croaky voice the previous day.  I confirmed that all of her vaccinations were up to date and that her previous medical history was minor stuff including a couple of bouts of tonsillitis in the past few months.  She had been admitted to hospital once when she was a toddler because of a very high fever and she has suffered very high temperatures on other occasions.  After giving so much detail, the doctor asked me if I was also a doctor.  I said that I was not, and that I just wanted to make sure that she had all of the information that she needed.

After her examination of Evelyn, she concluded that this was croup.  She said that the treatment was a single dose of Dexamethazone.  We went back to the chairs in the waiting area.  After a short while, I started to feel very thirsty, not surprising as I had leapt out of bed at 2 am.  I had brought a drink for Evelyn and she suggested that I drank it, but I wanted to keep that for her. I told her that I was going to look around the corner to ask if there was somewhere to get some water.  I looked back at her as I got to the end of the waiting area and told her that I would be a few seconds and only just around the corner.  Immediately, I saw the the nurse was coming towards me.  She showed me that there was a water cooler a few feet from where I was, so I quickly filled a plastic cup.  Whilst I did so, the nurse told me that she was on her way to us anyway because she had the Dexamethazone.  She suggested that Evelyn would take it better from me so I took it straight to her and administered it.  I recall thinking that Evelyn would take it from anyone if told to do so because she knew that it would help her.  She was very sensible and mature, when I needed her to cooperate.

I am not sure when, but the nurse took a second lot of measurements and recorded that Evelyn’s temperature and heart rate were still very high, although coming down.  She offered Evelyn the opportunity to lie down in one of the side rooms because she did not look very comfortable, but Evelyn did not want to bother.  Gradually, her breathing and condition improved a little.  The nurse took the measurements again and commented that her temperature had come down, but was still not normal, and didn’t think that the doctor would let us go home yet

Soon afterwards, Evelyn said that she felt sick.  I had a very quick look around, but could not see a sick bowl.  I sat her on the chair next to the open toilet door and ran around to the main A and E area.  There were several members of staff sat around the desk.  Presumably there must have been some patients in side rooms, but it certainly appeared very quiet indeed.  I asked a nurse for a sick bowl and she said that there was “a blue cupboard in there”.  I knew that I might not have time for a polite conversation and I felt very distressed because Evelyn was alone.  I can’t remember exactly what I said but it was along the lines of “I need one quickly – she is going to be sick any minute”.  She got up and went into a treatment room and appeared straight away with a disposable bowl.  I sensed her irritation.  I ran back to Evelyn.

I sat next to Evelyn and held the bowl under her chin.  She then stood up, clearly wishing that she could get it over and done with, but could not vomit.  The doctor then came to see us.  She began telling me that Evelyn could go home because she had received the medication for croup and her temperature was coming down.  She said that I needed to be aware of the signs of cyanosis, the blue tinge around the mouth that is seen in people with low oxygen saturations in their blood. Whilst talking, she had to pause because Evelyn started to vomit into the bowl.  I can still picture her expression of empathy as she waited until Evelyn had stopped.  She asked Evelyn if she wanted to go home, to which she replied “yes”.  I said that was not surprised because she looked shattered.  I remember saying “doesn’t she need antibiotics?” The doctor said that croup was viral and so antibiotics would not help.  There was a word missing from this statement – usually viral. I foolishly imagined that she knew more about croup than me.  I now know that she didn’t.  I was thinking at the time that it was getting on for 5am and so the GP practice would be open in a few hours.  If I was unhappy about Evelyn’s condition then I could try them.  I also had a question in my mind “how do they know it is a virus when they always say that?”

I asked the doctor what I should do with the bowl of vomit.  She told me to leave it there and a nurse would remove it.  I was amazed, as I thought that even Florence Nightingale would not do that, but she insisted.  She walked away and I pressed the door release and went back to the car park.  I have always found it shocking that people in desperate situations have to look for a pay machine to get out of the car park in hospitals in the UK.  The A and E drop off was not clear, so I had gone into the main car park. Fortunately, I scraped together enough change to allow us to leave and we drove home, both of us exhausted.  I was not convinced by the treatment so far, but told myself that they had seen lots of cases of croup and I had seen none before that night, so I needed to trust what I had been told.Photo0570

 

The truth

Evelyn was a beautiful, lively, fun child.  She is the very best daughter that I could ever wish for and my love for her will last forever.

When she died, we had to fight for the truth and still we have unanswered questions.  Those that lied have not been held to account and I know that future deaths cannot be prevented until we acknowledge the catastrophic events of 2013.

I am still living with Post Traumatic Stress Disorder on top of the agony of losing her.  Through this blog, I will tell the disturbing true story, using evidence and fact, about  a child that lost her life to incompetence and the horror of what her family have had to contend with to the present day.