Harriet was having a much better year, she had been admitted to hospital once and only needed to visit a hospital for consultant appointments, was now at school on a regular basis and generally doing well.
This year's Flu Virus vaccinations came out alot earlier and therefore we made sure that Harriet had her injection in early October, as we wanted to give her the best protection for the winter months.
It was only a few weeks later, when her brothers and sisters started to come down with Flu Virus type symptoms and therefore did our upmost to try and make sure that Harriet did not contract this respiratory virus.
Thursday 15th October 2015 - Harriet started to become unwell, she had a high temperature and started to have respiratory problems.
We implemented the first stage of Professor Harish Vyas - respiratory plan and hoped this would stop the virus in its tracks.
The following day Harriet`s condition started to deteriorate further, her respiratory system was struggling and we therefore decided it was best to call out the doctor.
When the doctor arrived, he had a good look at Harriet and at the respiratory plan we were working from. He told us that he was happy for us to continue with this, but also said that we would need to take Harriet to hospital, if we got concerned or her condition deteriorated.
Over the course of the weekend we continued with the respiratory plan, but were concerned that Harriet was still not getting any better.
Monday 19th October 2015 - Harriet was still very poorly, her breathing became very erratic, she had a temperature, raised heart rate and generally looked very unwell. We took a saliva sample from Harriet`s Tracheostomy and sent it to the Kite Team at the Derby Royal Hospital. We were told that it would take 3-4 days, before the results would be ready.
We called another doctor out the following day, as Harriet was still not responding to the respiratory plan and therefore we were not sure whether to continue with the plan or seek help from the hospital. The doctor looked at Harriet and told us that we were doing a good job and that Harriet seemed to be coping with the virus. She also told us to call for an ambulance, if Harriet`s breathing became distressed or if she started head bobbing.
We perserverd with the antibiotics, the salbutamol nebulizers and everything else listed on Professor Vyas emergency plan for a further 36 hours, but nothing we did was helping Harriet and we now needed help.
Thursday 22nd October 2015 - Harriet`s condition had now deteriorated significantly and we knew that if we did not get medical help soon, that we would be putting her life in danger. We called for an ambulance just after 4.00 am in the morning, it arrived under 5 minutes later.
The ambulance crew took one look at Harriet and told us that they only had a limited amount of equipment on their ambulance and that they needed to get her to hospital as quickly as possible.
Within a few minutes we had Harriet and all her medication in the ambulance and were now on the way to the Royal Derby Hospital, by Blue Light. At that time in the morning, the roads were clear and we arrived at the hospital in under 10 minutes.
The ambulance crew rushed Harriet into the Resuscitation room, where she was met by a team of doctors and nurses. The team asked us alot of questions about Harriet while they were inserting lines and taking blood from her.
A couple of hours later Harriet was moved from the resuscitation room, to the Dolphin High Depency unit, where she was placed in a bed and wired up to their life support monitor. Harriet looked extremely poorly and we were both now feeling mentally exhausted and stressed out.
Just before 8.00 am , one of the overnight physiotherapists came to look at Harriet, she listened to her chest and was not sure whether physiotherapy, was the best thing for her at this moment in time. She informed the doctor of her concerns and waited for a senior physiotherapist. The senior physiotherapist confirmed that giving Harriet physiotherapy at this moment in time, would probably make her worse and advised the team to wait until a chest x-ray had been performed.
Just after 9.00 am the doctors started to make their ward rounds, Harriet was first on their list, the senior doctor looked at Harriet, asked a few questions.
We told the doctor that Harriet had been poorly for well over a week and that a sample from her tracheostomy had been sent to the kite team, at the Derby Royal Hospital.
The doctor told us that they would continue with the intravenous antibiotic, but would check with micro biology, to see whether Harriet`s sample had grown anything.
Harriet continued to struggle throughout the morning and we were concerned that she would deteriorate quickly if something was not done.
A doctor came back to review Harriet a few hours later and told us that micro biology had initially grown a viral bug and that they were now going to change the intravenous antibiotic, in order to try and target this specific bug.
Harriet`s condition continued to deteriorate well into the afternoon, the nurses were giving back to back Salbutamol nebulizers, which seemed to have very little effect and if anything they were just making Harriet very tired.
We were now both very concerned that Harriet may give up and have no will to continue to fight this respiratory virus, she just looked as though she could take no more.
A new lady doctor took charge an hour later and changed pretty much the whole plan, as she felt it was making Harriet`s condition alot worse.
After a couple of hours, Harriet seemed a little better, her breathing was slower and she was not struggling as much, although she still looked very poorly.
I told the doctor that Harriet can deteriorate very quickly and I was extremely concerned that she was now too tired to carry on and would stop breathing.
The doctor took onboard my concerns and asked one of the nurses to set up CPAP machine in case Harriet`s heart could not cope.
Friday 23rd October 2015 - Harriet had struggled with her breathing throughout the night and simply looked too tired to continue breathing for herself.
The doctors made their ward rounds, after looking at Harriet`s chart and the progress since she had arrived. They now started show concerns that Harriet was now looking too tired to breath for herself and decided to initiate the set up of the CPAP machine.
It was now late morning, some of the doctors looking after Harriet seemed a little out of their depth and told us that they needed the input from Harriet`s paediatrician, Dr. Richard Bowker, on how best to set up the CPAP machine. They went on to say that Dr.Bowker would be able to give them a base line on Harriet and advise them on how best to move forward, with her care, as he knew her best.
The doctors phoned Dr.Bowker and were told he would come and look at Harriet after his clinic.
The hours passed by and there was still no sign of Dr.Bowker - Harriet`s condition, continued to deteriorate and the doctors looking after her were now running out of options.
The doctors and nurses perservered throughout the afternoon, to try and get Harriet stable and to try and stop any further deterioration, but this battle was now being lost.
Harriet`s heart rate was now at a dangerous 200 beats per minute, her head was bobbing all over the place as she tried to grasp every breath and could have very easily given up and died at any moment.
One of the senior registrars told us that Harriet was now too tired to go on any longer and needed a break from her breathing, they needed to put her into an induced coma, or she would probably die.
The doctor tried to get Harriet into the Queens Medical Center in Nottingham, but they had no beds available and therefore had to look for an alternative bed in a hospital that had a Paediatric Intensive Care Unit.
A hospital bed became available at The Royal Stoke Hospital and the plan was to take Harriet to theatre and put her into an induced coma, until the crash team arrived to take her to the Stoke hospital.
A team of Anaesthetists came to take Harriet to the operating theatre and told us that they would keep her alive, in an induced coma and make sure that she was cared for in a safe and controlled manner.
We were told to go home and get some rest just before 9.00pm and that they would call us within a few hours, once the crash team had arrived.
I went home with Lesley, but could not rest, I kept thinking about Harriet being kept alive by the anethestsists, while she waited for a bed and the team to take her to another hospital.
I felt so angry that Harriet`s life was again hanging from a thread, because the Derby Royal Hospital did not have its own Paediatric Intensive Care Unit. Their so called Derby Super Hospital could not protect the most vulnerable children in our society and were once again putting lives at risk.
I also found it hard to comprehend why Dr.Richard Bowker made no attempts to come and see Harriet, while she was in a such critical state, in his own hospital and will be therefore making an official complaint about this.
Doctors, nurses and a member from the kite team asked us whether Harriet had an up to date Resuscitation plan - which is a plan should things go wrong . I normally refer to this as the plan for death, the plan when doctors run out of ideas, which meant Harriet was now in a bad place.
Why was Harriet left to deteriorate to such a state ?, one of the nurses looking after Harriet said “this was no way for a human being to live”.
The doctors should have listened to me, when I said Harriet deteriorates very quickly, she should have been placed into an induced coma on the first day, given her heart had been struggling for over four days.
Saturday October 24th 2015 - we received a call just after 5.00am, to say that the crash team were now on their way to Sheffield Children's Hospital, as the bed at Stoke had now gone to someone else.
Lesley arrived at the Sheffield Children's Hospital just after 6.30a.m - the hospital was alot smaller than anything she had been to previously, there was no where to park and it looked quite run down.
She managed to find the Children's Paediatric Intensive Unit, quite quickly and was told to wait in the parents room until Harriet had been made stable.
A few hours later, Lesley was allowed to see Harriet and spoke to one of the consultants about what was happening to Harriet.
The consultant explained to Lesley that he had seen this condition before and told her it was called a Bronchial Spasm , which was associated with her asthma and the constriction of the lungs and a respiratory system constriction of the air ways . He went on to say that in Harriet`s case it was probably the ongoing viral infection that was causing a vicious cycle of asthma attacks and bronchial constriction.
Over the course of the next few hours the consultants, doctors and nurses all continued to look at ways of reducing Harriet`s respiratory problems.
Harriet was prescribed several new types of medication, that not only opened up her airways, but most importantly avoided any further Bronchial Spasms.
I phoned up just after 1.30pm in the afternoon to find out how Harriet was doing.
The nurse looking after Harriet came to the phone and explained that they were now starting to reduce the medication that had been implemented at the Derby Royal Hospital, as Harriet was now on too many medicines. She went on to say that Harriet was slowly starting to take her own breaths and that their plan was to get her off Life Support in a controlled manner.
I phoned just before midnight, to find out how Harriet was doing - the nurse told me that Harriet was comfortable and stable.
Sunday October 25th 2015 - I phoned the Sheffield Children`s Intensive Care Unit and asked to speak to the nurse looking after Harriet.
The nurse came to the phone and told me that Harriet had quite an unsettled night, her temperature had spiked and the consultants had to increase the amount input from the CPAP machine, as Harriet was struggling to breath. She went on to say that they have had to increase the sedation to keep her comfortable, but they now needed to know what the normal breathing pattern was for Harriet.
I told the nurse that Lesley would be at the hospital, just after 11.00am and therefore would be able to give them the much needed information on what is normal for Harriet.
Lesley stayed with Harriet for over 3 hours and updated the consultants on how she would breath when well, what she could and could not do. She tried to communicate with Harriet but she was too sedated to respond.
The consultants told Lesley that the main respiratory specialists will be in tomorrow morning and that they would be looking to try and help to get Harriet back to where she needed to be.
Monday October 26th 2015 - The consultants wanted to continue with their plan and give Harriet a rest on the CPAP Ventilator machine.
The nurses were giving Harriet 2 hourly Salbutamol Nebulizers and then bagging Harriet, to help open up her lungs.
A team of physiotherapists regularly came to see Harriet and helped loosen the secretions and clear her chest .
Tuesday October 27th 2015 - We decided not to go and see Harriet today, as we were both feeling physically and mentally drained, since Harriet had been taken into hospital.
I phoned the Sheffield Children`s Intensive Care Unit, just after 11.00a.m and asked to speak to the nurse looking after Harriet.
The nurse came to the phone and told me that Harriet had a far better night and seemed to be well rested. She went on to say that the consultant and doctors had reviewed Harriet and decided that they wanted to take her off sedation and the CPAP machine, in order to find out how she would cope.
I phoned the hospital again at 4.00pm and spoke to the same nurse that had been looking after Harriet.
The nurse told me that Harriet was now off the CPAP ventilator machine and was now in just oxygen, she went on to say that Harriet was working a little harder than they would have liked, but could be put back onto the CPAP machine at any point.
I felt relieved that Harriet was now awake and slowly starting to respond to the world around her.
Wednesday October 28th 2015 - I phoned the Sheffield Children`s Intensive Care Unit, just after 9.00a.m and asked to speak to the nurse looking after Harriet.
The nurse came to the phone and told me that Harriet had managed without any intervention from the CPAP machine and that the consultants were talking about moving her down to High Dependency care.
This was great news, I told the nurse that Lesley would be at the hospital within the next hour.
When Lesley arrived Harriet was off the CPAP machine, but looked as though she was still struggling and had to talk with the consultant looking after Harriet.
He told Lesley that Harriet`s breathing was getting better, the team had reviewed her progress on a daily basis since she arrived and they all felt that she no longer needed critical care. The doctor went on to say that Harriet had been put back onto the CPAP machine a number of times to have a rest, but she became worse .
The Sheffield Intensive Care nurse contacted the Derby Royal Hospital to find out whether there was a bed for Harriet. It was good news there was a bed on the Dolphin High Dependency ward, which meant she was now able to come back to Derby.
Harriet spent the rest of the day on the Sheffield Children`s Intensive Care Unit, while they waited for the ambulance team to arrive. Just before 5pm the team arrived, Harriet was now on her way back to the Derby Royal Hospital.
I had not seen Harriet since Friday, when she had to be put into an induced coma and could not wait to go and see her.
I arrived at the Derby Royal Hospital, just before 7.30pm and made my way to the Dolphin High Dependency Unit, I was not sure how Harriet would look and was apprehensive that she may deteriorate again.
As I walked into the room, I glanced over at the Saturation monitor - Harriet`s Heart rate was 122 beats per minute and had an oxygen saturation level of 97, these were perfect and seemed a long way from where they were just 5 days ago.
Harriet still had this devastating virus, her chest still was not back to the way it used to be, but looked as though she was starting to fight back.
As I left the hospital I gave Harriet a kiss on the side of her head as she went to sleep, she looked so peaceful.
Thursday October 29th 2015 - Harriet had a good night on the Dolphin ward and it now looked as though there was a possibility of her coming home soon.
The doctors looked at Harriet on their morning ward round and were pleased with her progress, they told Lesley, that she was more than capable of looking after Harriet at home, but only if the right equipment was in place. The doctor said that it may be possible for her to come home later today, but only if we had the oxygen machine in place, as Harriet required a constant supply of oxygen.
Harriet had oxygen at home, but there was nowhere near the volumes needed to keep her safe. I spoke to the Kite Team about the oxygen requirements and when we were looking to take Harriet home.
A few hours later the oxygen company phoned to say that they could install the new machine, within the next four hours.
This was great!! - Harriet could now finally come home.
The oxygen machine was installed a few hours later and after some guidance, we were good to go and now just needed to know when Harriet was ready to be discharged from Hospital.
Lesley phoned me to say the doctors were concerned about the blisters in Harriet`s eyes, which had been caused by them being open while in Sheffield. She should have had eye drops to act as tears, but the doctors had not given her these and they had now blistered.
It was now 5.00pm - the Optomologist came to have a look at Harriet`s eyes, he had a good look and said that she needed eye drops to help keep them moist. He then went on to say that we would need to tape Harriet`s eyes closed at night to help heal her eyes, as there was a possibility of severe damage to them if this was not done.
I went to collect Harriet just before 7pm, the doctor had written up her notes, her medicines were ready and all that needed to be removed were the two catheters.
One of the male nurses came to take Harriet`s catheters out, she had one in her foot and one in her arm. These only took a few minutes, but looking at the needle scars from all the other catheters that had been inserted while she had been in hospital, it was amazing she had an veins left
We took Harriet home in her push chair, she looked dazed and a little unsettled at times, but soon calmed down once she was back her bedroom. As she looked at the lights in her room, she once again looked happy and alot calmer than in the last week.
This Bronchial Respiratory Virus has really shaken Harriet, it was life threatening and could have very easily taken her.
Friday October 30th 2015 - Harriet had been on a low amount of oxygen over night, but seemed to be making some good progress since she was discharged from hospital.
9.35a.m - I received a call from the one of the doctors, at the Derby Royal Hospital - the lady doctor told me that they had received results from the Sheffield Children's bio lab. The results from the hospital indicated that Harriet had some form of fungal growth in her Blood and this now needed to be treated, as a matter of urgency.
The doctor indicated that Harriet may have to come back into hospital for a further 2 weeks as she needed intravenous antibiotics.
I told the doctor that we were not happy about this and were very concerned that Harriet may contract other bugs from within the hospital.
The doctor said she would run this past the consultant and come back to me.
An hour later the doctor came back to say, that the consultant was happy giving antibiotics through Harriet`s gastrostomy tube, but she did need to come in for blood tests and swab tests.
We took Harriet into the Derby Royal Children`s department an hour later, where we admitted on to the Puff inward as a day case for tests.
The nurse came to take a swab of Harriet`s Gastrostomy tube and a saliva sample from her tracheostomy.
An hour later one of the junior doctors came to take blood samples from Harriet, but was unable to do so, as most of her veins had been used. The doctor told us, he was not confident getting a blood sample and would therefore bleep the registrar on call to do this.
We had to wait another hour for the registrar and were about to leave, when she walked through the door, she apologised for being late and then asked us to take Harriet into the blood room.
The registrar spent a good few minutes looking at Harriet`s veins, before deciding on which was the best vein to get a good sample. She then proceeded to take blood from Harriet`s foot, there seemed alot of blood and looking at Harriet, she had very few veins to give any further blood.
I think what really struck me, was the resilience of Harriet - she had the will to live and put up with alot of pain and torment in order to stay alive.
I would like to Thank, all the consultants, doctors and nurses at the Derby Royal Hospital, especially those on the Dolphin High Dependency Unit.
I would also like to say a s Big Thank You, to all the consultants, doctors and nurses at the Sheffield Children`s Intensive care Unit - for getting Harriet stable and helping her cope with this devastating viral condition.
Jason
