Having struggled to fight off the Chickenpox virus in July, we thought that Harriet would finally turn the corner and start to have some better luck and enjoy the rest of the summer.
Harriet had only been discharged from the Queens Medical Center Hospital in Nottingham for a few weeks, when we noticed that there was blood coming from her spine, it looked as though we may have caught it on something when moving her and put on a gauze to protect it.
The Kite team nurse, from the Derby Royal Hospital was due to come out in a few days to show us how to change Harriet`s gastrostomy tube and thought it was best to simply keep changing the dressing until she arrived.
A few days later the kite team nurse came out to show us how to change the gastrostomy tube, this only took a few minutes and we both felt that we were now able to change the tube should an emergency arise.
We then told the nurse that Harriet was bleeding from her spine and that we were concerned it was the spinal rod piercing through the skin. The nurse looked at the wound and was unable to really comment as to whether it was the rod coming through or simply a cut from outside, but told us to keep it clean .
Over the course of the next 8 - 10 days we continued to clean the wound and put on medical gauze to keep out infection as best we could, but the wound seemed to be getting worse.
The physiotherapist from Harriet`s school and a representative from a specialist seating company, came out to take a mould of Harriet`s spine for her new chair. We told them that Harriet had been experiencing some problems with her spine and that this was causing allot of discomfort, but we were hoping this would clear up by itself.
After Harriet had been moulded for the new chair, the physiotherapist asked us if she could see the wound on Harriet`s back, we said yes no problem and took her into Harriet`s bedroom. As we pulled back the protective gauze, the therapist looked quite concerned about the wound, as did the specialist seating man. They asked us if the spinal surgeon had seen this wound and whether anything was in place to put it right, we told them that the only person that had seen to wound was the kite team nurse from the Derby Royal Hospital.
We were both now very concerned that we had left Harriet too long without alerting the spinal surgeon and decided to call the spinal nurse Ann Marriot at the Queens Medical Center in Nottingham.
I managed to get straight through to the spinal nurse and told her how concerned we were about Harriet, I explained to her that the bleeding from the spine had been present for nearly 2 weeks and that Harriet looked very uncomfortable at times.
The nurse told us to keep the area clean and not to get it wet as this could cause a severe infection, especially with the wound being next to the spinal cord. She tried to get hold of the spinal surgeon Dr. Michael Grevitt, but he was operating on another patient at that time and therefore told us to bring Harriet into see Michael at 9.00 am the following morning.
We arrived at the Queens Medical Center in Nottingham just before 9.00 am this morning and made our way to Dr. Michael Grevitt office, we were both very anxious as to what he was going to say, but knew we were now in the right place.
Dr. Michael Grevitt arrived just after 9.00 am and came straight to us, he asked us how Harriet had been and whether anything may have caused this. We told him that we thought it could have been when she was lying down at a higher angle on the new settee, but we were not sure.
Dr.Grevitt then went over to examine Harriet, he pulled off the protective gauze and started to feel the wound for any obstructions or metal work, that may be causing the problem from inside Harriet`s spine. After a few minutes he told us that he thought one of the metal ties connected to the spinal rod was pushing against the skin and trying to break through.
We both looked at each other and knew this now meant surgery, for me this was a feeling of anxiety, stress and now worry.
Dr. Grevitt then went over to his computer and pulled up Harriet`s spinal x-ray, he studied them for a few minutes and then told us that in his opinion it was part of the spinal frame that was causing the problem. He then went on to say that Harriet needed an urgent operation to correct the metal work, before the whole rod came through her spine.
It was allot to take in, there were life threatening risks involved with the spinal surgery, especially with Harriet, given her complex needs and condition.
I asked Dr.Grevitt when he would be able to do the operation and how long it would take to do the spinal corrective surgery.
Dr.Grevitt told me that the surgery needed to put Harriet right, was not as intrusive as a full scoliosis operation, but would need the same methodical planning as the previous operation, which included a full team of medical professionals on hand and a bed ready on PICU. He asked the nurse to book Harriet in with the Dr. Suzanne Wake, Consultant Peadiatric Spinal Anaesthetist for an initial consultation next week and that he would try and get Harriet in as soon as possible.
The spinal nurse put a further dressing on the wound on told us to keep it clean and not to get it wet and that she would look at the wound next week, when we came into see Dr.Wake.
As we left the room with Harriet, all I could think about was Harriet being in further pain after the operation, being back on life support in the children`s intensive care unit and having to fight for her life once again.
On the way home we talked about how we were going to try and keep Harriet safe and protect her from infections before the operation, but knew this would be a real problem as the wound was now getting larger.
2014 has not been a good year for Harriet, we just hope that she does not pick up a life threatening infection before or after the operation.