Tuesday, 29 April 2014

The Way Ahead

Today we had the long awaited call from the consultant at the hospital.
We were told that sometime in the next six weeks that lucy would be going into hospital for two procedures. He couldn't give us a specific time because he has to work out when he can fit her in for both procedures where she won't be in hospital for any longer than necessary and so that they can both be performed a week apart.
The first procedure will be another manipulation where her bones will be pushed back into position while under a general anaesthetic. Then she will be fitted with the halo again.
A week later they will open her up and insert a metal plate and tiny screws to keep the bones in position.

After the operations she will be wearing the halo for as long as necessary. Then we will see the end results. We already know that her neck will never be completely straight, and that she will have limited movement. How bad it will be we will have a long wait to see.

I can't say I'm not scared because I am, I'm terrified. I already know the implications of the manipulation and the halo as she's had these done before. That is scary enough. I don't yet know the implications of the fusion and I'm not looking forward to hearing about it. It sounds like she will be in theatre a long time.

At least we have some time now to mentally and practically prepare for her stay in hospital.

We have not yet heard from the paediatric rhuematologist she was referred to, and they probably won't be able to assess while she is in the halo, so I'm going to contact them and let them know what is happening. I already know that the communication system in the hospital is not that good.

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