We had been under the umbrella of the Queens Medical Centre Hospital in Nottingham for more than 2 years, Harriet`s complex neurological needs meant that most of the people we saw were from this hospital as they specialised in neurological brain disorders and other specialist areas.
When we last saw Harriet`s neurologist, Dr. William Whitehouse at the end of November 2011, he advised us that we needed more support for Harriet in our local Derby hospital and explained that more people needed to understand Harriet`s complex medical needs.
Harriet was rushed into the Derby Royal Hospital towards the middle of December 2011, with respiratory distress and had to be admitted to the Children`s Dolphin Intensive care unit for a few days. Dr. Bowker was one of the consultant doctors that looked after Harriet during her stay on Dolphin ward and said that he would be more than happy to take Harriet as one of his patients with the Derby Hospital. We received a letter a few weeks later asking us to attend a clinic at the Derby Children`s Hospital on January 13th 2012.
As we arrived at the hospital, Harriet was taken into the room with the nurse to be weighed and then a few minutes later we were asked to go through to see Dr.Bowker.
Dr.Bowker introduced some of his team and then asked us whether there had been any further problems with Harriet since her stay in hospital in the middle of December.
We explained that Harriet had continued to experience some sort of virus and that we had to take Harriet to the children`s accident and emergency on Christmas day.
Dr.Bowker continued to look through Harriet`s notes and went on to talk about her tracheostomy, medicines, feeding and development. Dr.bowker then asked us whether we had any concerns about Harriet, or was there anything that we needed.
We explained that we had most things for Harriet, in fact her room was like a mini hospital, but we had noticed that Harriet had lost quite a bit of weight during the Christmas period, due to her illness affecting her feeds.
Harriet`s new dietician confirmed that Harriet had lost quite a bit of weight, but felt that this was down to the virus and that in her opinion we should continue with the current feed plan.
Dr.Bowker noticed that Harriet was very stiff and although she may have needed her medication, her stiffness should not have been so severe. He explained that being stiff for long periods of time would cause alot of problems and that he felt Harriet would benefit from having injections to some of her muscles, which in turn should relax them.
We both seemed very comfortable with Dr.Bowker and his team, but when he asked us whether we had made any emergency plans should the worst happen to Harriet, I stopped him in his tracks and said that I did not want to talk about anything macabre in relation to Harriet. I wanted to deal with the here and now, not look at what might be, as this was very negative and I could not deal with this.
I know Dr.Bowker meant well and that this was probably the sort of question he would have to ask any parent that had a child with a serious debilitating life threatening disease.
As we left the room, I felt very emotional, but was unable to show any of this while I was in the hospital.
Driving home I started the feel the tears running down my face, for the first time in a very long time, I started to come to terms that Harriet was going to die.
As a parent I feel lost, abandoned and helpless, no parent should ever have to mourn for their children, but knew that unless I found someone the Help Harriet soon, then this would come to pass.
Waking up this morning, I would never have thought that I could feel so sad inside and that one day I would have to deal with Harriet not being in my world.
I hope tomorrow brings better things and that I can feel more positive about Harriet, there is a collection at the Derby County ground against Coventry city, between 1pm and 3pm.