We have just endured a week of hospital and operations with our little girl and I thought that seeing as I have five minutes to myself, and a laptop, I would give you an update on how she is doing.
The story began ten months ago when Star woke one morning with a twisted neck. We took her to hospital and she was eventually diagnosed with a rotary subluxation of the atlanto occipital joint. I remember having to write that down so that I would remember it, it rolls off my tongue now.
First line of treatment was muscle relaxants and a cervical collar. Then she was given physio therapy and a cervical collar. Nothing seemed to be working and fnally in December 2013 the consultant resorted to desperate measures and she was taken to theatre for a manipulation and a halo.
For thirteen weeks she endured that awful contraption until it was finally taken away on 3rd of March this year. What happened next almost broke my heart….her neck went straight back into it’s bent position. It hadn’t worked.
On 2nd April we found out that a part of the C1 bone in her neck had deteriorated and that she would need an operation to fix it.
We had a bit of a wait which was really distressing. We don’t know what actually happened at the hospital but her consultant is no longer operating and she was passed on to a different team. I had to push to get her seen again, watching my little girl getting worse by the day and fearing that the longer they left her the worse it would be. Finally they contacted me to say the operation would go ahead this week.
She was admitted onto the ward on Sunday and on Monday morning went down to the theatre to have another manipulation and the halo returned. Then on Wednesday morning she was taken back to the theatre to endure a six hour operation where they fixed together her C1 and C2 bones with wires and a metal plate. Because the C1 was so damaged they also had to perform a bone graft using some bone from her skull. Because they had to do that she had to have to halo back on for at least six weeks while the bone graft ‘takes’
Providing it all works then her neck should be stable, but she will lose up to fifty percent of her mobility of her neck. She won’t be able to turn left or right very much. We do have something to be thankful for, the surgeon thought she may need a further fixation to her occipital joint which would have meant that she would not be able to look up and down either. Thankfully he did not have to do that.
It’s been an incredibly stressful week but now Star is doing fine and we are just waiting for her to recover. Today she even managed to sit up in bed and is talking a little more. The physio therapists did try to get her to sit out of the bed but she lasted only five minutes. I believe that we will have her up and moving in the next few days. Sadly she has the advantage of knowing how to walk and move with the halo on, which is something that has to be learnt.
Now we are hoping that this has worked, I really don’t think we could endure any more, especially my poor little girl who has developed a real fear of being in hospital and in particular needles. Sadly, she is still enduring blood tests after having a big transfusion during her operation.
A big thank you to everyone who has sent us all good wishes. I’m going to add a photo, this is Star one day after the operation. She actually looks worse now as the swelling has begun, but she really is a little Star, even the nurses call her that.