Harriet`s brother Michael had contracted the chickenpox virus in the first week in June and became very tired, run down and slept a lot of the time. He was kept well away from Harriet and our other children, as we were conscious that if Harriet caught the virus, she would have real problems.
A week later Harriet`s eldest sister Evelyn who was 11, came down with the chickenpox virus quite badly, she was completely covered in them. Evelyn had similar symptoms to Michael, but also had problems with her respiratory system and became very upset that she was unable to breath properly.
We were extremely concerned that the chickenpox virus had spread to 2 members of the family and that it was now a real possibility Harriet could also contract the virus.
It was getting near to the middle of June, Michael and Evelyn were now on the mend and although they had the chickenpox spots, they were not thought to be contagious, as the spots had scabbed over.
June 16th - Harriet started to become very tired, for no apparent reason, we had checked for chickenpox spots, but we were unable to find anything and thought she may just be a little run down.
We had been given some tickets to the Twycross Zoo Dream night on June 19th, it was an event we had taken Harriet to in 2013, she really enjoyed it and we were looking forward to taking Harriet back.
A day before Harriet was due to go to Twycross, she came down with what looked like chickenpox, we were obviously concerned about Harriet`s well being, but at the same time wanted her to enjoy things in life.
June 19th - it was now the Twycross Zoo dream night event, Harriet`s spots had not become any worse, but at the same time she was not quite right. We decided to go to the event, but as a precaution we would keep Harriet at a good distance from the other children, just in case she did have the virus.
After an hour, it became very clear to us that Harriet had simply had enough and just wanted to go home, so we made our way back to the van.
The next day our fears had come to fruition, Harriet had now come out with chickenpox spots, all over her body and became very lethargic.
We phoned the Kite team at the Derby Royal Hospital and asked them if there was anything that we needed to do or be aware of. They told us to do all the things we had done with our other children and to only bring Harriet into hospital if we were really concerned.
Tuesday 24th June, Harriet had been suffering from the chickenpox virus for 8 days now, unlike the other children Harriet seemed to be getting worse and we were becoming extremely concerned about her well being. As the day progressed, Harriet`s breathing seemed to become quite erratic at times and would then resume to her normal pattern.
During Tuesday night, we had to implement the emergency respiratory plan we had been given by Professor Vyas, as Harriet was now starting to have real problems with her breathing. We were up all night with Harriet, but really struggled to get on top of her respiratory problem, which we simply put down to her chickenpox.
It was now just after midnight or the early hours of June 25th, we simply ran out of options and had to call for an ambulance. The fast response man arrived within a few minutes and quickly assessed Harriet`s condition, he did not seem to be over concerned and told us that he would take Harriet in if we thought we could not manage her.
We told him that Harriet deteriorates very quickly and that we would prefer to get her checked out at the Derby Royal Hospital, to be on the safe side.
As Harriet was loaded into the ambulance her condition started to deteriorate rapidly and needed to get to hospital quickly. The ambulance crew informed the Derby Royal Hospital that Harriet was only ten minutes away and that she was having severe respiratory problems.
The ambulance arrived at the Derby Royal Hospital, Harriet was rushed into the emergency resuscitation room, a nurse wired Harriet up to the saturation machine, while one of the doctors tried to find out what was wrong with Harriet.
It seemed I had made the right decision taking Harriet to the hospital when I did, she was now in 10 litres of oxygen, the salbutomol nebulizers were having little effect and her condition was still deteriorating fast.
Harriet`s oxygen saturations were now around 70 and still dropping, even with all the oxygen on tap, nothing seemed to be helping her, the doctor was extremely concerned about her well being and had to call the emergency anaesthetist team.
Within a few minutes of the call, the consultant anaesthetists and his team were in the resuscitation room with Harriet, a few minutes later the consultant told us that he needed to put Harriet into a coma state for her on well being. He told us that Harriet needed to go onto ventilator or life support machine, as she was clearly struggling to breathe on her own.
Harriet`s heart was now racing at over 180 beats a minutes, she looked completely exhausted and our concern was that if something was not done soon, she would either give in or have a heart attack.
I tried to calm Harriet down by stroking her hair, but she was really struggling, she looked at me for a couple of seconds, a tear fell from one of her eyes down her face onto the bed and then she closed her eyes. I knew then that she could not take much more and was on the brink of giving in, I felt so helpless.
It seemed that history was now repeating itself, Harriet was in a life threatening situation and without being intubated or put into an induced coma, she would simply die.
The consultant anaesthetist managed to put Harriet to sleep and then wired her up to the ventilator, the machine was now taking all Harriet`s breaths and essentially keeping her alive.
I felt so relieved that Harriet was no longer struggling, but at the same time just wanted to cry, as I looked at how poorly she had become in such a short space of time.
The Derby Royal Hospital still did not have a PICU or Paediatric Intensive Care Unit, which was needed to keep Harriet alive and safe on a life support machine.
I felt that Harriet and children like her were once again being let down by the Derby Royal Hospital and that the hospital was potentially putting vulnerable children in life threatening situations.
The Derby consultant tried to find a bed for Harriet at the Queens Medical Center in Nottingham, but seemed to be struggling to get them to confirm whether or not they could take Harriet onto their PICU.
It was now a waiting game, Harriet was in the resuscitation room, without a hospital to take care of her, it was frightening the first time, but to be in this situation again in less than a year was simply unacceptable .
We were told that if the QMC were not able to take Harriet, that she may need to go to Sheffield, Birmingham or further afield, which again seemed completely wrong and totally unacceptable.
Just over an hour after later the doctor had a call from the QMC, to say that they had a bed and that their specialist retrieval team would be with Harriet with an hour.
I felt so relieved that help was now on its way and that Harriet would be cared for in a hospital that knew her well and had the medical professionals needed to keep her alive.
We were both finding it hard to stay awake, it had been an exhausting day, that seemed to be getting worse and was now out of our hands.
The retrieval team arrived on time and with so much medical equipment, it looked like they were planning for a major disaster. They told us it would take a few hours to get Harriet ready for the ambulance drive to the hospital and that we could go straight to the QMC and wait for Harriet.
After collecting a few things from home we arrived at the paediatric intensive care unit in Nottingham, Harriet had just arrived, but we were told to wait in the parents room while they transferred her to the life support machine.
Harriet had been placed in an intensive care side room as she had chickenpox and was a risk to other poorly children on PICU.
An hour later we were called into the room , the consultants explained to us that Harriet needed a cuffed tracheostomy fitted before the whole in her neck closed up completely. The intubation tube would be removed and Harriet would be then wired back up to the ventilator or life support through the new cuffed tracheostomy tube.
Within an hour Harriet had a new cuffed tracheostomy tube fitted, which was linked up to the ventilator., it felt such a relief that she was now in a place that could give her the expert care needed to keep her alive.
The doctors and nurses continued to monitor and administer medicines throughout the rest of the day and kept us up to date with Harriet`s condition.
June 26th - Harriet was now on her second day in intensive care, she had only been on intensive care for a scoliosis operation in 2010 and then in 2013, due to an ambulance driver administering too much rectal diazepam for Harriet to cope with, so we knew this was now very serious. She continued to require help from the life support machine, as her body was completely exhausted, but also had a major virus running through it.
June 27th - Harriet had been sick, this was something she did not normally do, the doctors were concerned she could aspirate onto her lungs, but also commented on the colour of the sick or aspiration. They decided to aspirate all the fluid from Harriet's stomach on a constant drain, any fluids lost from the aspirate would be replaced. We were told that Harriet's bowels had stopped working, gone to sleep or temporary paralysed by the infection, the surgeons managed this as paralytic ileus secondary to sepsis ileus.
We did not think this was going to be a problem, but when we were told that most of Harriet's medicines could not be given through her gastrostomy tube, as her stomach would not absorb them, we knew there were going to be issues and that Harriet would run into problems.
June 28th - Harriet was still extremely poorly, but looked as though her breathing was getting better and started to have time off the life support machine, to see how she would cope. They doctors initially tried Harriet off for four hours, but she started to get tired and had to go back onto the life support machine, during the afternoon and over night. Her temperature was still high at times and there were still no bowel movements, the dark green aspirations from her stomach were also still in high volumes.
June 29th - Harriet managed to stay off life support for the whole morning and was put back onto the machine about 2pm, they then took Harriet back off the machine until 8pm. The doctors proceeded within caution as they knew Harriet could struggle if she was pushed too quickly and decided to put her back on life support over night. The thick green aspirates or fluid continued to come out of Harriet's gastrostomy tube, as the viral infection shut down Harriet's bowels and caused problems with her stomach. Consultants tried to give Harriet the much needed medication through her tube, but her stomach was not absorbing it and therefore all medication ran back out of the gastrostomy tube into the collection bag.
June 30th - Harriet managed to stay off the life support machine all day and was now completely in air, her temperature had also come down to a manageable level. The consultants told us that Harriet's infection markers were also coming down and that they were starting to get on top of the viral infection which was caused through her chickenpox. There were no bowel movements and the green aspirate was still a real problem.
The bowel surgeons came to see Harriet twice a day, as they were concerned about her aspirates and wanted to get a plan in place, should things deteriorate. We told the surgeons including Dr.Davis who fitted the gastrostomy tube, that Harriet had an updated gastrostomy tube over a year ago and that a disc should have passed through her bowels, but we never saw it. They all told us that we probably missed this and that there was no way it could still be inside Harriet or be the reason why Harriet was suffering from a bowel obstruction.
We felt reassured by what Dr.Davis and all the consultant surgeons had told us, but could not understand why Harriet was suffering from such a serious bowel obstruction.
July 1st - Harriet had been very tired and looked to be taking a downward turn during the morning, she looked extremely unwell and was unable to interact with us.
Around midday Harriet's condition continued to deteriorate and at one point her heart rate disappeared from the machine, the nurse came running into the room and tried to get a response from Harriet, but was unable to do so. I then went over to Harriet to try and get her to acknowledge me, but there was simply no response. The doctors were called in as Harriet's condition continued to get worse, her heart rate was slowly dropping, she was still completely vacant and had extremely high blood pressure.
The doctors told us that they thought Harriet was in the middle of a cranial seizure, due to the combination of the vacant episodes and high blood pressure and that they wanted to administer the anti seizure medication Buccolam Midazolam. An hour after the anti seizure medication had been administered Harriet was completely a sleep and had a much better blood pressure reading.
Just before the seizure had started the nurse confirmed Harriet had managed to have a bowel movement , which was good, but doctors told us they could still here no bowel movements.
The doctors told us it was extremely important that Harriet to had a central line, as she had not had any food in over 6 days. We were asked to leave the room while doctors started to fit the central line, it was a sterile procedure and needed complete concentration. An hour later we returned to Harriet's room, the curtains were still drawn, which meant the line had still not be fitted. We decided to wait in the parents room on PICU until the doctors had finished. The time seemed to go extremely slowly, but eventually we did see the doctor, he looked very tired as he walked towards us, he said that he had not been able to fit the central line and would try again tomorrow.
July 2nd - The consultants started to do their ward rounds, when they reached Harriet they told us they were anxious to get the central line in as Harriet was now into her 7th day without any food and was becoming weaker by the day.
Harriet's neurological consultant Dr.William Whitehouse came to see Harriet, he was concerned about her not getting some of her new neurological medicines, due to her stomach not absorbing important medicines and gave the doctors some alternatives to put through the line that would help Harriet to relax.
It was just before midday and the consultant doctors arrived to put the central line in, they told us that they would try and use a smaller line, but if they struggled then they may have to go into a larger artery.
We went for a long walk before returning to the room, the curtains were still drawn like the previous day and therefore decided to once again to wait in the parents room.
Over an hour later we were allowed back into the room, Harriet was back on the life support machine which really concerned us. The doctor told us that he had to go into one of Harriet's main arteries in her groin and that he had to completely paralyse Harriet for her own safety, which also extended to her respiratory system . He told us that Harriet really fought the drugs she was given which included Ketamine and Rock, he said that he would watch over Harriet until her breathing returned to a safe and manageable level.
Harriet was now able to start having a special food called Paediatric Parental Nutrition, through her central line, this had been specially made up using her blood profile, nurses would take regular blood tests and send to the dietician to work out what Harriet needed. The dietician would then send the list off to the laboratory, where they would then make a feed that was specifically made for Harriet's nutritional requirements.
July 3rd - The nurse told us that there had been a bit of an emergency around 6.00am in the morning, the gastrostomy tube had ruptured and fallen out of the hole in Harriet's stomach. She went on to say that the nurse on duty had been fortunate enough to fit the emergency gastrostomy tube, that we had taken into hospital.
The image below shows the burst Gastrostomy tube:
The first ward round of the day, the team reviewed Harriet and decided to continue giving the PPN feed through the central line and not to try feeding Harriet through her new gastrostomy tube, as they were concerned about the green fluid coming from the tube.
I told the consultants that the gastrostomy tube had not been changed, since it had been fitted by Dr.Davis more than a year ago and that we were struggling to get any help from our Kite Team back at the Derby Royal Hospital, about when it should be changed.
The PICU team told us that the gastrostomy tube should be changed every 3 months and were quite surprised we had not had it changed in such a long time.
I felt extremely let down by the Derby Royal Hospital and especially the Kite Team, they had failed to give Harriet the correct care and follow up plan, she desperately needed, they were the so called experts, but seemed completely clueless.
Throughout the rest of the morning and into the afternoon, Harriet`s heart rate slowly increased and stayed around 150 beats per minute, which was just not Harriet. The nurse was concerned a few times and asked the doctors to review Harriet, they all seemed puzzled and were not sure what was causing Harriet to become tachycardia.
The doctor came to review Harriet just after 7pm and was concerned that she was still tachycardia and decided it was best to give Harriet some further fluids, in case she was dehydrated.
July 4th - Harriet looked calmer and a lot more settled this morning, her breathing was still not where it needed to be, but she was certainly a lot better than she was the previous day.
The nurse told me that the stomach and bowel consultant Dr. Davies had been to look at Harriet and was happy with her stomach, but wanted the stomach drain from her gastrostomy tube to be elevated.
The PICU consultant reviewed Harriet on the morning ward round, he told me that her breathing was getting better, but he was still concerned about the paralytic ileus. He went on to say that it normally lasts between 10 -14 days, but in children that have a lot if complicated problems like Harriet does, it could take longer before it cleared.
I was able to get Harriet out of her bed and put her into her chair for a couple hours, where she watched her IPad and seemed relaxed to a point, her secretions were also a lot more manageable.
The registrar thought Harriet's tachycardia could be linked to a higher than normal dose of Glycopyronium that was being administered through her central line and decided to reduce the next dose in order to rule this out.
Paralytic ilues continued to cause problems for Harriet for the rest if the day, with large aspirates being produced from her gastrostomy. Dr. Davis returned just before 6 pm to review Harriet's progress and told us it was now a waiting game.
Every time we asked Dr.Davis or a member of his surgical team about having Harriet being scanned for a possible bowel obstructions, they seemed reluctant to go down this route and wanted to simply wait.
This was very frustrating, we knew something was wrong and that there must be more to this, but had to listen to the surgeons, as they were the professionals.
July 5th - As we walked into Harriet's room on PICU, she looked calm, the nurse had just finished all her cares and put the DVD player on for her. The nurse told us that Harriet had a settled night and did not have any significant problems, her heart rate was still raised, but it was pretty much the same as yesterday.
The surgeon Dr.Davis was off work over the weekend, but had asked another surgeon from his team to keep an eye in Harriet.
It was now mid morning and the ward rounds had come round to Harriet, the consultant told us that Harriet was stable and had not picked up any further infections which was encouraging, his main concern was the paralytic ileus.
An hour later the surgical team came into examine Harriet, he told us that it was encouraging that Harriet's bowels had opened a few days ago, but this needed to be a regular movement. He went on to say that paralytic ileus can go on for weeks in children like Harriet, but at some point next week they would need to run further tests to make sure there were no blockages or problems they may have missed.
We were both thinking Harriet was going to be in hospital for weeks while this infection cleared up and were also concerned that if her bowels did not start working soon, that she may pick up an infection through her central line.
A couple of hours later Harriet opened her bowels, it looked as though Harriet's bowels were trying to clear the infection and she was slowly getting over this nasty paralytic ileus.
We were both concerned that Harriet had lost some weight and decided to put her on the scales, she was now 12.5kg, Harriet was previously 13.2kg and therefore had lost quite a bit of weight, since she had contracted the chickenpox virus.
July 6th - The bowel surgeon arrived just before 10.30am this morning, he told us the green aspirate from Harriet`s gastrostomy tube was getting lighter, but also producing a lot less fluid, which was good. He went onto to say that if Harriet`s aspirates continued to be light and in a less frequency, that he may put a plan in place for some light trophy type feeds.
Harriet spent quite a few hours in her chair and seemed to enjoy interacting with us, she was calm and less anxious than she had been over the last few days.
The surgeon returned late afternoon, to look at the aspirates and check Harriet`s stomach for any swelling. He said he was pleased with Harriet`s progress and wanted to start the small feeds of 5 mls of milk every hour.
The nurse was given the new feeding plan from the surgeon, he told her to keep a good eye on Harriet and to check the aspirates every four hours.
We were anxious to see whether Harriet would cope with any milk, but had to wait until after midnight for the answer. I phoned the PICU unit and asked the nurse whether Harriet was tolerating the milk, she told me that Harriet seemed to be absorbing the milk and that she was pleased with her progress.
It felt such a relief that Harriet had now taken some milk, but we did not want to build our hopes up too much and knew tomorrow would be an important day.
July 7th - As I walked into Harriet's room this morning, I noticed that Her heart rate was significantly raised to just over 150 beats per minute, she had tachycardia once again. The nurse told me that Harriet was now on four hourly observations, rather than the previous two hourly observations from the previous day. She said that the doctors wanted Harriet's gastrostomy tube to be aspirated every four hours to see how much milk she had absorbed and to also see whether there was any green coloured fluid in the milk.
We were both looking at the tube as the nurse took the aspirate at 10.00 am this morning, there was just over thirty mils from the tube, but the milk was a light green colour, which indicated there was still a problem, we both felt quite down about this and wondered if Harriet was ever going to get better.
The surgeon came to see Harriet just before midday, he examined her and could only here a small amount of bowel noise. He then looked at the aspirate the nurse had taken at 10.00am this morning and was concerned that there was still too much green colour being aspirated and asked the nurse to stop all trophy feeds.
It was very disappointing to see that Harriet was taking really small steps and sometimes taking backward steps, but at the same time knew the surgeon were just trying to protect Harriet from any further problems.
Harriet no longer had the chickenpox virus or displayed any of the spots and was therefore moved into the main PICU bay with all the other children, until there was a bed available on the surgical ward.
July 8th - As we drove to the Queens Medical Hospital in Nottingham, we both felt quite depressed that Harriet was making slow progress and wondered if we would ever here any positive news.
We arrived on the PICU ward, the doctors were on their ward rounds and therefore we had to wait until the doctors had finished, before we could see Harriet . It was just over an hour since we had arrived and were allowed back onto the ward, as we walked over to Harriet's bed, we both wanted to know if the green fluid had stopped aspirating from her gastrostomy tube. I looked for the bag, but it was not attached to the gastrostomy tube, which seemed quite strange, we had to wait until the nurse had finished sorting Harriet's medicines before we could ask any questions.
The nurse told us that the surgeon had been round and examined Harriet, he was happy with her stomach, but more importantly the colour and volume of the aspirate from the gastrostomy tube. She went on to say that the he also wanted the gastrostomy tube aspirated every three hours and all volumes had to be recorded.
The nurse started to do Harriet's 11.00am medicines which was not particularly exciting, but when she told us that she also had to do the first three hourly aspirate, we both felt very anxious, would it be good news or bad news. The nurse finally finished the medicines and took a 60 ml syringe and tried to get an aspirate but nothing came back, she then tried a 20 ml syringe and got back only 3mls of what can only be described as clear fluid . The green fluid seemed no more, the nurse was very upbeat about this and took the aspirate to the doctors, who were also pleased with today's progress.
Although we were both feeling a lot more optimistic about the aspirate, we knew that when Harriet went into her chair, that the green fluid normally got worse and therefore did not want put her in the chair, but knew we had to in orders rule out any problems.
We put Harriet in her chair to drain her chest and also allow her to have some time out from the bed. Lesley played with her for a couple of hours, Harriet looked very happy to be out of the bed interacting, but also seemed to be getting her personality back.
As we put Harriet back into her bed and went for something to eat, all we could think about was will the aspirate be still clear and if so will they try and feed her.
It was now 2 pm, the nurse was due to take the all important gastrostomy aspirate, which would in turn decide whether Harriet would go back onto trophy feeds, or continue to stay on PPN feeds.
It was good news the aspirate was only 13 mils, the nurse informed the doctors, but they were still being cautious and wanted to wait for the surgeons to review Harriet before they did anything.
The consultant told us that Harriet's central line was now at risk of infection and that he wanted to put in a new central line, in order to reduce this risk, as she was making some good progress. Once the line had been fitted , an x-Ray was taken to confirm whether or not the central line was in the correct place and then the old central line was removed.
The consultants were worried Harriet was now at risk of picking up a respiratory virus from PICU and told us that it was important for her to go onto a surgical ward, as these are wards are normally virus free zones.
We knew Harriet was now going to be moved later this evenings and decided to go home and get something to eat and have a rest from the hospital. A couple of hours later we received a phone call from the nurse on PICU, she told us they had a bed on the surgical ward D35 and that Harriet would be going onto this ward within a couple of hours.
Just before 8pm Harriet moved to ward D35 , she settled in but it was extremely noisy with children crying on the ward, this really upset Harriet at times, Lesley also found the noise unbearable as she tried to sleep next to Harriet.
Lesley had only been on the ward a few hours with Harriet, when her brand new iPhone went missing, it was her only point of contact with the outside world and obviously caused Lesley a lot of unwanted stress.
July 9th - The consultants started Harriet on 5 mil trophy feeds last night, which she seemed to have tolerated . When the consultants looked at Harriet on their ward rounds they were happy she was tolerating a small amount of feed through her gastrostomy tube, but were cautious to not push Harriet too much and put her back.
The central line had now been in for 7 days, it was the only way they could give Harriet the PPN feed, which she needed until such a time she was able to tolerate full feeds through her gastrostomy tube.The surgeons and consultants told us that they did not want to replace the central line unless they really had to, as Harriet would need to go into theatre to have this procedure done, there was also a chance it could put her back on life support. They did how ever have a plan and were trying to get Harriet back up to a reasonable rate of feed through her gastrostomy tube and then remove the central line , which would then rule out e possibility of infection.
It was now 2pm, the nurse returned to aspirate Harriet's gastrostomy tube, we knew if the aspirate was larger than 50 mils or was a dark colour that feeds would stop, so it was a tense moment for us all. It was good news Harriet had tolerated the first trophy feed of 5 mils and hour and was now able to increase the amount to 10 mils an hour.
Things looked like they were improving and we both hoped that Harriet had now turned a corner.
July 10th - Harriet had tolerated the 20 ml trophy feed from this morning and the doctors were anxious to see whether she could also start having all her medicines, as it had been over 2 weeks since she was able to have feeds and medicines combined. Just before midday Harriet had her first batch of medicines, with a water flush, the next few hours would determine whether she would cope with medicines and milk.
Harriet's day started off a bit shaky, she was constantly secreting and required a lot of suction, she was also finding it hard to maintain her oxygen saturation levels and had to go on to oxygen for a short period of time. It seemed as though the lack of Glycopyronium was causing all the secretion problems, but the doctors continued to monitor the central line in case this was a problem.
The surgeons came to look at Harriet , they were pleased with her progress and wanted the PPN feeds through the central line to stop, as Harriet was now tolerating trophy feeds through her gastrostomy tube. This was great news, we knew that if Harriet could tolerate her medicines and milk through her gastrostomy tube , that we would be much closer to bringing her home.
It was 2 pm the nurse wanted to take an aspirate from Harriet's gastrostomy tube, before she increased the trophy feed to 25 mils an hour, it was an anxious few minutes, but when the nurse only drew back 3 mils of aspirate, I knew Harriet was now making some good progress.
The new trophy feed started just after 2 pm and would run for a further 6 hours, before an aspirate was taken. If Harriet maintained good aspirates throughout the night, then the plan for the morning would be to go back to her full meds and feeds.
It was 7.20 pm - Harriet became very upset for no apparent reason, we called the nurse over as we were not sure what was wrong. We told her that Harriet was in a lot of pain, but there seemed no reason why she should be, her heart rate was tachycardia, just over 160 beats per minute. Harriet then open up her bowels and continued to be very upset for a good ten minutes, we just had no idea what was wrong with her, or what had caused her to act this way.
When we came to change Harriet's nappy, Lesley noticed some sort of foreign object in the nappy, that looked almost like a part from a toy car, she picked it up and shouted to the nurse , I was right that rubber bung from the stomach Peg was still inside Harriet. This part was quite large, it was about the width of a ten pence piece, but then had a long rubber stick on it , we both found it hard to comprehend this being inside Harriet and could now see why she had been so uncomfortable for such a long period of time.
The picture below shows the back of the peg that was trapped inside Harriet - this is the part the surgeons were telling us could not be still inside her.
We had been telling the surgeon Dr.Davis - that performed the peg operation over a year ago, that we had never seen the part come out in Harriet's nappies and that she had never been right since the procedure.
Dr. Davis had told us on many occasions that we had probably missed the part in one of Harriet's nappies and that it was not possible for this to be still inside Harriet after this amount of time. His team of surgeons also agreed with him and therefore this was never looked at by any of the surgeons, it was simply brushed under the carpet and not even thought of as a possible problem.
We were both very angry that this had happened, but there was nothing we could do about it right now, all we could focus on was getting Harriet out of hospital.
July 11th - Harriet had tolerated all her feeds during the night and was now up to her normal rate of 29mls an hour, the nurse took the morning aspirate and it was within the guidelines of being normal.
The surgeons reviewed Harriet earlier this morning and gave the green light for the central line to come out, they were extremely pleased with the progress she had made over the last few days.
A few hours later the doctors came to see Harriet on their morning ward rounds, they told us they were taking out the central line this morning and would try giving Harriet her first 2 hourly feed at 2pm. I showed the ward doctor a picture of the foreign object that had been passed in Harriet's nappy, he looked very shocked and asked me whether the surgeons were aware of this. I told him that the nurse had seen it and made notes, but the surgeons had not seen a picture of the object, neither had they tried to find out from us what it was.
The doctor told me that he would get the surgeons to come and see me about this foreign object, to explain why it was still inside Harriet after all these months.
It was now 2 pm the nurse took an aspirate which came back fine, she then gave Harriet a couple of medicines, before starting the all important first feed of 100 mils of milk over 60. This feed would take about one and a half hours and would give a true indication of how Harriet was getting on.
Harriet continued to meet all the feeding requirements throughout the day and was nearly ready to come home .
The doctors told us that if Harriet continued to do well in the next 3 feeds, that there was a good possibility she would discharged from the hospital.
July 12 - Harriet was now back to her normal feeding and medicine plan, the chickenpox and paralytic ileus had now gone, we both felt so relieved that she was getting over the worst things.
It was now the weekend, which meant there would only be a few consultants and doctors around that could discharge Harriet, as the hospital was now on its skeleton staff.
The morning ward round was a bit late, but we were glad to see the doctors, they gave the green light for Harriet to go home, she just needed the last cannula out and her medicines from the pharmacy.
It was just after 7pm , the nurse went through all Harriet`s medication and then gave us the all important discharge letter, it felt like Harriet had been in hospital for months.
The discharge letter listed the respiratory failure, chickenpox, paralytic ilues, septic ilues, high aspirates and chest infection - but failed to mention that the stomach tube burst and there was a massive piece of plastic and rubber trapped inside Harriet`s body.
The surgeons never came to see us after the rubber part had passed through Harriet, it seemed as though they were simply not interested in talking to us about this
I will address the failings written above in writing to both hospitals, but at the same time must also accept that not every hospital department can run without problems.
On a more positive note I would like to say thank you to the doctor in resuscitation at the Derby Royal Hospital, who made the call to get the anaesthetist onsite, who in turn put Harriet to sleep and then on life support.
As for the Queens Medical Center Hospital in Nottingham, you have once again saved Harriet`s life and for that I will always be in your debt.
Your Paediatric Intensive Care Unit is run with military precision, you have some of the best registrars, consultants, doctors and nurses, I have ever seen . The staff worked with us to try and resolve Harriet`s problems and gave us hope, showed compassion and were always listening to what we had to say.