After Harriet had seen the spinal surgeon Michael Grevitt on August 20th , we were pleased that we now had a plan to get her spine repaired in the middle of September.
The following day we noticed that Harriet was starting to get a temperature and were not sure if she had picked up a viral infection or whether the spinal rod had now become infected and was causing her to become unwell.
We took Harriet to the Children's Accident and Emergency at the Derby Royal Hospital just before 7pm, we both explained that Harriet's spinal rod may have become infected and that we were told to bring her straight into the nearest hospital. After being seen by the nurse for observations, Harriet was placed in one of the bays while we waited for the doctor to come an assess what was causing the high temperature.
After a short wait a junior doctor came to look at Harriet, he asked us a few questions about her condition and what we thought was causing the problem, before going to find a nurse to help him . It took the doctor over 40 minutes to come back with a nurse, which initially seemed quite a long time, but at least he was now able to look at the spinal wound. As he pulled back the water proof dressing we could see that the wound had become a lot worse, it looked very red and infected, there was a lot of blood and fluid that had collected in the dressing.
The nurse took some swabs of the wound and then cleaned the area before fitting a new water proof patch, which we had to supply as the Derby Royal Hospital did not seem to have any in their Children's Accident and Emergency.
After the dressing was changed we thought we would be given some antibiotics and would then be able to leave the hospital with Harriet, but the doctor told us he needed to speak with his consultant and would be back with us shortly. A further 40 minutes passed and I had to ask a nurse where the doctor had got to, she told me she would try and find him.
The doctor finally returned , he told us that his consultant was concerned about the wound not only being from the spinal rod, but also it being so close to the spinal cord. He told us that they needed to take some bloods from Harriet and that he now had to put in a catheter .
I felt really annoyed that the doctor had not taken bloods as soon as we had arrived and made it very clear that I was not happy in the way he was dealing with Harriet.
The doctor went to fetch a nurse and the relevant equipment for taking blood samples, which again took him a very long time, but at least he was now trying to do something to find out whether Harriet had an infection or not. After two attempts of trying to put in a catheter the junior doctor gave in and told us that he would need to get his consultant to do this.
We finally got to talk to the consultant, she told us that her main concern was any infection spreading to Harriet's brain and causing her life threatening problems and the only way to prevent this was to have a strong anti biotic through intravenous.
Harriet had the bloods taken and was then admitted to the puffin ward, as the Hospitals High Dependency Unit was closed.
I was concerned for Harriet's we'll being as she had nearly died on Two separate occasions on the puffin ward and let the staff know that I was not happy about this. Once on the ward we both took it in turns to stay with Harriet, so she was never without one of us, we settled on the ward quickly, the nurses and doctors were very actually quite nice, Harriet's room was also nice and we started to feel at ease.
The consultants from the Derby Royal Hospital had to liaise with the surgical team from the Queens Medical Center in Nottingham, the QMC told the Derby consultants that Harriet needed to go onto the strong intravenous antibiotic called Vancomycin.
Over the course of the next few days Harriet continued to have a high temperature, but it did start to come down to a manageable level, it seemed as though the anti biotic was now starting to control the infection.
The consultant on call over the bank holiday weekend had spoken to the surgical team at the Queens Medical Center in Nottingham and arranged for Harriet to be transferred to the surgical ward D34.
Sunday 24th August - Harriet arrived at the Queens Medical Center in Nottingham and was taken to ward D34, the bay was very small in comparison to her room at the Derby Royal Hospital, but we had to accept that she was now in a place that could potentially fix her spinal problem and continue to treat the infection.
As skeleton staff were on for the long weekend , not a lot really happened, we just tried to keep Harriet's pain under control and at the same time try and entertain her on a very busy ward.
Monday 25th August - I arrived at the hospital and walked up the stairs onto D floor, I bumped into Harriet's spinal surgeon Dr. Michael Grevitt and walked with him towards D34, he asked me how Harriet was and what had caused her to be in hospital. I explained that Harriet started to suffer from a high temperature for no apparent reason and that we had taken her to the Derby Royal Hospital, where they then admitted her.
Dr. Grevitt went onto ward D34 and had a look at Harriet's spine, he told us that he was pleased that the metal work had not completely come through, but then went on to say that she needed an operation on Tuesday to put things right. He then told us that he would try and get a bed booked on PICU and potentially put a team together for the surgery, but would let us know later in the day.
In the afternoon the nurse came over to tell us that the surgical team had provisionally added Harriet to Dr. Michael Grevitts morning list, but we would know more in the morning.
A few hours later one of the consultants came to see Harriet about taking bloods to send off for cross matching for the operation, should Harriet need a blood transfusion. The consultant and a nurse took Harriet into the medical room and collected blood samples, Harriet seemed calm but also very aware of what was going on.
We were both feeling very anxious, the spinal operation was possibly only a few hours away and we just had no idea as to how Harriet would cope this time.
It was now 9pm, the dressing had come off Harriet`s back and we noticed that there was now a second wound, it looked as though another part of Harriet`s rod was now coming through her spine, this was the part of the rod Dr. Grevitt, did not want to touch unless he really needed to.
Tuesday 26th August - All Harriet's feeds had been stopped from 2.00am this morning as we were told Harriet had been added to Dr.Michael Grevitts surgical morning list.
Lesley had stayed with Harriet over night, but had not been given a time slot for Harriet's operation, the nurses were also not sure and told us that they were waiting on the surgical team to give them an update.
It was just after 10.00am when one of the nurses came over to tell us that Harriet's operation had been moved to the following day, as Dr. Grevitts surgical cases took up most of the day.
We both felt very disappointed that we had to wait another day, for us it was more anxiety and worry, but we both knew that the surgical team were trying to be as safe as they could be and not rush Harriet into an operation.
An hour later one of Dr.Grevitts fellows came to talk to us about the operation, he told us that Harriet needed a full team of people that knew her well and that Dr.Grevitt would do the surgery on either his first or second list tomorrow.
We tried to keep Harriet comfortable and entertained, but this proved to be a real challenge as she was limited to what we could do with her. In the afternoon she became quite upset and started to cry uncontrollably she looked really bored and we could tell she just wanted to be somewhere else.
Dr. Michael Grevitt was supposed to come and see Harriet late evening to discuss the procedure and get all the relevant paperwork signed, but was unable to come up as his was still working on other patients.
Wednesday 27th August - it was now the day of the Spinal operation, we were both feeling extremely anxious, Harriet looked as well as she could do considering all of her problems.
The nurse told us that Harriet was going down today, but could not confirm a time and therefore we had to hold off on all her feeds. Harriet was able to continue with her medicines and a small amount of water flush, but nothing else.
It was just before 1pm, when Harriet's spinal surgeon, Dr.Michael Grevitt came round to see us about the operation, he talked about what he needed to do and then asked us me to sign the consent forms. Dr.Grevitt told us that he would see Harriet in theatre for the operation at about 2pm .
Just before 2pm one of the nurses from the ward took us down to the operating waiting area, where we met the anaesthetist and Dr.Grevitt.
I went through with Harriet into the anaesthetists' room and stayed with Harriet until she was slowly put to sleep, it really upset me as I walked away from Harriet and tried to think about her being well.
We returned to ward D34 , just after 4pm, thinking Harriet might have returned from surgery, but her bay was empty, I asked the nurse if she could find out where Harriet was. The nurse called theatre and told us that Harriet was now in the recovery bay, being stabilized for the ward.
Just before 5pm I was called down to the recovery area to see Harriet, she looked very upset and in quite a bad way, but I was told this was a combination of the anaesthetic and the pain killer morphine.
I stayed with Harriet in the recovery bay for another hour, the team wanted to get Harriet onto PICU, as it was now getting late and told me that they would meet me up there in a few minutes.
I went back to ward D34 to collect Harriet`s things and then went onto PICU, to see how she was getting on. Harriet looked really agitated and quite upset, I think the operation had caused her a lot of discomfort and she was simply unable to cope with the pain.
The PICU doctors were given instructions from the anaesthetist, to keep Harriet comfortable with some intravenous pain killers, which could be administered if calpol and nurofen were not effective.
Harriet seemed to settle just before I left PICU at 8.30pm and I was able to go home knowing she was in good hands.
Just before midnight, I phoned the PICU unit and asked the nurse how Harriet was doing, she told me that Harriet had settled in well and that she had not needed too much pain relief since I had gone home.
Thursday 28 August - Harriet looked a lot better this morning, the nurse had done all her cares and Harriet looked really comfortable. The nurse told us that Harriet had a good night and did not require any of the main pain killers and was now on calpol and ibuprofen .
On the morning ward round the doctors were happy that Harriet was now stable enough to return to ward D34 and told us that she would be transferred to the ward later in the day, when a bed became available.
Harriet remained comfortable throughout the morning and into the middle of the afternoon.
Just before 4pm, Harriet was transferred back onto ward D34, she went straight back into the quiet bay near the window and spent the rest of the day watching her DVD's and sleeping.
Friday 29th August - The spinal team wanted to make sure that the corrections that were made to Harriet`s spinal rod in surgery, were in the right place and asked the nurse to take Harriet to the x-ray department. The x-ray only took a few minutes and Harriet was back on her tour to ward D34, where we now waited for the news as to whether the surgery had been a success.
One of the consultants came round to look at Harriet, he first of all gave us the good news, that the rod was in the correct place and that everything looked good. He told us that Harriet would be able to go home if the biological department found no further infection or bugs in the bloods taken from the surgery, but these would not be in until the afternoon.
We both really wanted to take Harriet home, she looked well within herself, but knew that if they did find anything in the blood, then she would continue with the intravenous antibiotics and would need to stay in hospital.
It was just after 1.30pm when the consultant came round to see Harriet for a second time, she told us that the results had come back from the bio labs, Harriet no longer had an infection and was now able to go home.
We both felt really happy that we could take Harriet home and not have to spend another weekend in hospital.
We would like to thank all the team on the puffin ward at the Derby Royal Hospital for making Harriet`s and our time in hospital as nice as it could be, given the circumstances.
It was also nice to see the Derby Royal Hospital and the Queens Medical Center hospital, communicating with each other, this is something that has always been a problem, but on this occasion it was quite seamless.
Although we could never leave Harriet on any ward apart from PICU given the nursing ratio to patients, I have to say that D34 ward at the Queens Medical Center in Nottingham, was a pleasure to be on, the nurses were extremely helpful, nothing seemed to be a problem for them, quite a friendly ward indeed.
A big Thank you has to go out to the consultant spinal surgeon, Dr.Michael Grevitt, he took the time to come and see Harriet on his day off and made all the relevant preparations to get Harriet back to where she needed to be - a true gentlemen.