Cranio meeting

Published April 3, 2012 by swanfreddie

I laid in bed last night & couldn’t sleep. All i could think about was the possible skull op Freddie might need.
We’ve known for a long time that Freddie might need the op, but his mri scan was clear & showed that there was no pressure on his brain so it was looking more hopefully that he may not need it. He was sent for a sleep study a few months back but the results weren’t the best. The respiratory doctor said that Freddie has a ‘very small midface and the shape of his skull may explain both the central pauses  and also the difficulty in air moving in and out’
A meeting was held on 27th March with the craniofacial team, ENT & respiratory doctor to discuss the results. As I was going out of my mind panicking as to what the outcome of this meeting was I rang them today to try & find out what the plan is. Seemingly the craniofaical team want us to go & see them…now i’m not sure if this should make me even more worried. We have a routine app booked in with them in September so is the reason it’s being brought forward to discuss the need for this horrendous op?
We have been through a lot with Freddie & I think we have managed to stay strong through most of it but I really don’t know how i’d cope sending my son off for an 8+ hour operation knowing there are risks involved. I feel sick thinking about it.
I’m hoping maybe the sleep study results are wrong & he doesn’t stop breathing 28 times over the space of a few hours, but the fact i’ve just been up & seen him stop breathing probably means they are correct 😦

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2 comments on “Cranio meeting

  • So sorry you’re going through this. I know it’s not very reassuring, but they won’t put Freddie through for this surgery unless they’re absolutely certain he needs it. I know how awful the waiting time is, but whatever they decide you’ll be able to cope. It won’t be easy, and it won’t be straightforward, but you’ll get through it because you are a great mother and you’re there for your son whatever he needs. x x

    • Thank you. I think the not knowing is the worst part. I’m sure if he needs the op i will find the strength to get through it (not really got a choice i suppose) but i just hate it hanging over us like a black cloud.

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