The last three days have been a complete emotional roller coaster. First, Lucy's operations were moved to different dates, then they were postponed altogether, then yesterday afternoon we had a call saying it was all back on and could we bring her in immediately.
So we arrived on the ward and had a nice little cubicle, Bed no1. We had a fairly good night despite it being a very noisy ward. So many crying children, it's difficult to ignore them.
This morning Lucy was a little panicked. We had told her that she was having the halo back and she'd been ok with it. She was ok with it last time, she dealt with it much better than us! However, this morning she decided she didn't want it back and was distressed.
By the time we took her down to be anaethetised for theatre she was really upset. She screamed when given the canula, and gagged and sobbed as the anaesthetic was administered. It was very distressing.
The manipulation and halo application went really well and took nearly an hour shorter than last time. We could see why when she got back...four screws instead of eight? Also, her neck is not very straight. Still it's just a temporary measure until the next big operation.
On Wednesday she will go back to the theatre, hopefully she'll be keeping her canula in until then so no big needles. The will open her neck and attempt to screw her bones in place along with a metal plate. To create a better fusion they will also had some bone graft, taken from her thigh or her skull. She is going to be hurting afterwards for sure.
Once they have completed the fusion they will decide whether or not to keep the halo on for a while. She could be coming home in five to ten days after the operation depending on her recovery.
During the time leading up to operations you feel so anxious, so worried that something may go wrong and that you will be leaving the hospital without your child. You don't want to think that way, but you know it's a possibility and it hurts to even think about it. Then while your child is recovering on the ward another little patient loses their battle and your heart starts pounding and the pain feels so real even though you know it's not your child. Then shortly afterwards, yet another patient loses their battle. And you cry, you don't even know these children, but you know it could so easily have been your child and you feel the pain of the parents an family, you feel their loss.
Having a sick child is so emotionally draining.