It had been three very long anxious months since we last spoke with Harriet`s Back Surgeon Mr.Grevit and now knew that it was a make or break situation for Harriet.
We arrived at the Queens Medical Hospital just before Harriet`s appointment at 10.20a.m this morning and were asked to take Harriet for an x-ray on her spine that would show whether anything had changed with the way her curved spine was developing .
Twenty minutes later we arrived back in the waiting room and within a few minutes were called into see Mr.Grevit .
I could tell straight away that the news he was about to give us would not be great, he was looking down towards the ground and avoided eye contact with us . Mr. Grevit asked us what we thought about all the tests Harriet had been for and whether we thought the comments that the relevant consultants had given us were encouraging .
I reacted quickly in order to try and make the meeting a little more upbeat and said that I thought all the tests had been very encouraging and that we were had not had any negative feedback or heard anything that would be seen as something that would cause Harriet to not have the back operation .
Mr.Grevit looked quite stunned by my reply and very politely told me that he had spoken with all the consultants including professor Vyas the respiratory specialist and that the conversation he had with him was not very encouraging.
I got quite angry and raised my voice as I was incensed by this and could not believe what I was hearing and told Mr.Grevit that our meeting with Professor Vyas was very positive, he did not seem concerned by Harriet`s Trachesotomy and gave us no indication that there were going to be any major problems on a respiratory level that would in his opinion stop Harriet from having the Back operation .
Mr. Grevit then looked for a report from professor Vyas in Harriet`s notes, this was not present and therefore he was unable to comment any further on the conversation he had previously had with professor Vyas as there was no reference to the report .
We then spoke about Harriet`s MRI results that had been forwarded on from Dr.whitehouse - Dr Grevit did not profess to be a neurologist and had limited understanding in this area, but did say that the myelination could be a potential life threatening problem .
It seemed that once again bad news had rained down on us and I simply snapped and accused the surgeon of not wanting to operate on Harriet due to government cuts .
Mr.Grevit stayed very calm and once again acted very professionally, he assured me that it was not the cost to the NHS for Harriet`s operation that was the problem, but the overall well being of Harriet and what was best for her . He explained that is a very difficult time for you and your wife and the decisions you both make will be ones that you will have to live with for the rest of your lives, whether these be the right or wrong for Harriet. He went on to say that if Harriet went for the operation then she could possibly die during the procedure or be stuck on a life support machine for the rest of her life.
I was once again stunned by this life threatening scenario, but rather than get upset I started to process the information Mr.Grevit was giving to me and started to think that this operation would be a bad idea.
Mr.Grevit said that he really wanted us to come back and have a meeting with all the consultants in order to find a way forward .
I smiled and shook Mr.Grevits hand, I wanted to apologise for my outbursts, but just kept thinking about all the information he had given us and what was best for Harriet.
On the way home from the Queens Medical Centre, Lesley and me both agreed that we did not want to put Harriet through any further pain and therefore a ten hour operation to correct her spine was not an option at this time.
Our main goal now is to try and find someone worldwide that can help Harriet, her main problem is that the Myelination is not forming to protect the nerves in her brain and seems to be detioriating, without treatment she will simply fade into a coma and die.
If anyone can help Harriet, then we need to hear from you before time runs out.