Help Harriet

A few days after we had seen the Anaesthetist at the QMC in Nottingham, we received a phone call from the Neurophysiology department at the QMC hospital; they wanted to perform a nerve test that would help monitor Harriet during the operation.

We were a little taken back that Harriet had to go for another test within a very short space of time, but arranged to go back into the hospital on the on the 31^st August, which was the following week.

The appointment was 12.30pm and after struggling to park the car we arrived a few minutes late, the lady at the main desk pointed us to the right place and off we went.

Once we arrived on Neurophysiology, a consultant and nurse came down to see us and then asked us to go up onto the next floor where they could perform the relevant Neurophysiology tests.

The consultant performing the tests explained that Harriet needed to be wired up to a machine with electrical probes that would pass a current through certain parts of her body in order to create a response from the nerve pathways in Harriet`s body, this information would be used as a baseline during the operation .

One by one the wires started to go onto Harriet`s head until all the wires were in place, the consultant then introduced an electrical current that was went straight into Harriet`s foot, she increased the current or voltage until she got the response she wanted from Harriet and then printed off a report.

The test lasted about 40 minutes and once all the data was collected, the consultant confirmed she had all the relevant information for Harriet`s operation and that we could now take Harriet home.

Dad

We arrived at the Queens Medical Centre in Nottingham with Harriet,  just before 2.30 in the afternoon, Harriet was tired and we were able to let her sleep while we waited for the lady at the desk to confirm Harriet`s appointment .

The lady behind the desk said that the consultant wanted Harriet to have an EEG scan and  would  see us after Harriet had been for the scan . A few minutes later we arrived at the room and Harriet was wired up to the EEG machine, the scan only lasted a few minutes and we were then told to head back to see the consultant aneasthestist .

A few minutes later we were back in the room and the nurse asked us if she could take Harriet`s weight, as the aneasthetist needed to work out how much aneasthetic would be required during the operation .

It was then back into the waiting room and we finally got to see Dr Suzanne Wake, who was Harriet`s consultant paediatric aneasthetist.

The meeting started well, Dr Wake talked about Harriet and what was involved during the operation and what to expect after the operation. Some of the information was quite graphic as the consultant explained how many tubes would go into Harriet`s veins, this made us both feel quite sorry for Harriet and once again we started to question why Harriet was actually having the operation, but we knew deep down that if she did not have it then her life would come to end within a very short space of time.

Dr Wake then examined Harriet and looked for possible veins that would be used during the operation to initially put Harriet to sleep.

At the end of the meeting we were asked whether we had any questions or concerns about Harriet`s operation.  I looked at the consultant and asked whether she thought Harriet would be ok and Dr Wake said that they would not be operating on Harriet unless there was a good chance the operation would be successful, but also highlighted that sometimes things do happen that are out of the control of even the best surgeons and consultants, but they always try and plan for the worst.

I shook Dr Wake`s hand and that of the scoliosis nurse, feeling more confident that Harriet would have a better chance of survival during the operation, but also knew that things could go wrong and the anxiety of being in the hospital with Harriet felt very overwhelming .

We took Harriet home and tried not to think about the operation.

Dad

We had alot to think about since our last meeting at the Queens Medical Centre, but knew that Harriet would be in for the life saving operation on her spine within a very short space of time .

Letters started to arrive from the relevant consultants involved with Harriet`s care during the operation and after a few days it really started to dawn on us the severity and importance of this operation .

Harriet initially had to be hooked up to a sleep monitor  system to track Harriet`s normal breathing patterns, during sleep and when she was awake, the test lasted 24 hours and then we took the monitoring box back to the QMC for analysis . The following day we had a phone call from Professor Vyas, who is Harriet`s Respiratory physician, he told us that he had looked at the data collected from the machine and that Harriet`s breathing was acceptable for the operation .

Within  a  few days after Harriet`s breathing tests were confirmed acceptable for the operation, we received two further  letters from the QMC, that came days within each other. The first letter asked us to bring Harriet for an anaesthetic assessment with Dr.Wake at the Queens medical Centre on 26^th August .

The second letter really hit home, it was for a pre-operative assessment with Harriet`s surgeon Mr.Grevitt on September the 7^th, the letter went on to say that Harriet would be admitted to the ward on September 27^th and they would operate on Harriet the following day .

We are now both very anxious about Harriet`s operation and have been in two minds as to whether she should have it, but now realise that there is only a short window open to allow surgeons to operate before the winter months set in and the wards start to fill up with patients with winter viruses .

This September will a very testing time for us as a family and only time will tell whether we made the right decision to go forward with the Scoliosis back operation and try to save Harriet`s life .

Dad

It had only been a few weeks since we had seen the consultant back surgeon Mr. Grevitt , but today was the day that we would finally meet Harriet`s team at the Queens Medical Centre to establish what was best for Harriet .

We arrived at the QMC this morning with Harriet and started to head towards the conference room, Lesley started to get quite upset and just could not go into the room as she could not take any more bad news and therefore my mum came with me .

At the meeting was  consulatant Paediatric Neurologist Dr. whitehouse, Professor Vyas, Consultant Paediatric Respiratory Physician,  Mr Grevitt, Consultant Paediatric Spinal Surgeon, Dr Suzanne Wake, Consultant Paediatric Spinal Anathestist and Miss Ann Mariot, Scoliosis Nurse Specialist.

The meeting started very formally , all the consultants and doctors reintroduced themselves and then Mr Grevitt took charge of the meeting .  I was asked to start the meeting by explaining what it was that I thought was wrong with Harriet .

I felt extremely anxious and  overwhelmed by the question, but tried to answer this as best I could, I said “Harriet was suffering from some form of white matter disease that was slowly causing her brain to short out and that her overall development was controlled by her brain .

Mr Grevitt  then explained to me that he had informed the team that I was not happy at our last meeting and that I wanted to know why Harriet`s operation had be postponed.

Each member of the team had looked at Harriet`s file before the meeting and then one by one they gave a full account as to what the risks would be if Harriet was to go through with such a major operation.

After each person had spoken I then got my chance to ask questions to each of the relevant consultants or doctors and was able to build up a clear picture as to what would happen to Harriet if we did nothing.

It quickly became very obvious to me that Harriet`s scoliosis was getting a lot worse and without surgery she may die within a very short space of time . Professor Vyas explained that Harriet`s lungs had very little space to grow and that if her lungs continued in this way then an operation later next year may not be possible and her lifespan would be significantly shortened.

I explained to Professor Vyas and the team that I was not prepared to watch my daughter Harriet die and that as much as I did not want to put her through anymore pain, that an operation to correct her spine and back was the only way forward .

I felt very emotional and just wanted to cry but the extreme amount anxiety adrenalin in my body stopped me as I waited for the response from Mr Grevit and the rest of his team.

Mr Grevitt said that he was prepared to do the operation given Harriet`s current situation and would now look to get Harriet in for surgery before October this year, he reiterated that there were risks involved during and after the operation as did the rest of his team, but knew this is what I wanted for Harriet .

The meeting ended and I was told that they would all meet again next week to find the earliest date and the best way to operate on Harriet .

I shook everyone hand and walked out of the meeting with Dr Whitehouse .

Dr Whitehouse asked us if we would go with him to ward E-39, as he wanted to take blood samples from Harriet, Lesley and myself , which would then be sent to Professor Adeline Vanderver in Washington DC.

We had the blood samples taken and were told that these samples would be sent to Washington today and that all Harriet`s medical files, including MRI scans, would also follow.

As I walked out of ward E-39 onto the corridor with Lesley I felt so drained and just started to cry, Harriet was getting worse and there was nothing I could do but wait.

Dad

We are pleased to announce that a Trust called HELP HARRIET has now been set up to raise money to help pay for Private Physiotherapy, Vital Medical Services, Research, Transportation Costs and many other things that will Help to give Harriet a better quality of life .

Harriet`s website now has an online DONATION  Payment page that allows people from the United Kingdom and around the world to Help Support Harriet in these very difficult times.

Over the last few days Harriet has had some good coverage in Local, National Press and Radio, that highlight the ongoing problems that Harriet has on a daily basis .

We would therefore like to thank the Daily Mirror newspaper, Derby Evening Telegraph, BBC Radio Nottingham and Radio Derby for your continued support.

A lot of people have also contacted us over the last few months regarding the possibility of raising funds for Harriet and we have had to say this was not possible until the Help Harriet Trust was in place, but now the Trust has officially been set up, we are now looking forward to the first fundraising event.

HARRIET`S FIRST FUND RAISING EVENT

Harriet`s first fund raising event is planned for 6th August and has been organised by Sarah Conway of Long Eaton Derbyshire. Sarah and her friends are planning to start off at the Box Office in Long Eaton with Buckets and flyers dressed up as school girls and boys.

They will be calling at most of the public houses in Long Eaton... this must be a sight not to be missed. If you are in the vicinity do look out for the motley crew.

Thanks Sarah and friends for yourt support and hard work.

You can alsosupprt HARRIET by taking part in sponsored events like a Marathon, Walking, Music Event, Parachute Jump, Car Boot, Quiz Night or anything you feel you could do to Help Harriet.

If you would like to discuss how you can raise money for the HELP HARRIET TRUST, please contact Penny Murphy   penny@helpharriet.org

Mum and Dad