Saturday, 1 December 2012

Blog 51 - Op #8 for Nick - 8 years - Lefort III Advancement - October 2012

We were at the hospital at 6.45am. Nick had fasted. We were fortunate that Nick was first on the list so we would not have the long wait that we had with Melissa. There was a PICU bed available for him.

We saw the anaesthetist and tried to act calm to keep Nick calm.

It wasn't long and we were called and went to wait in the waiting room outside of the theatre. We knew the nurse there from all the previous operations so we had a friendly chat and catch-up with her. Other parents who were there waiting with their littlies stared at us.

Nick wanted me to go into the theatre room with him so I donned the gown and hat.

It wasn't long - about 8.30am when the nurse came out through the theatre doors to collect Nick.

He climbed up onto the table and breathed in the gas...putting him to sleep. I prayed a silent prayer over him for God to keep him safe, and I kissed him....and left.

You know it is hard leaving your child on that table not knowing what is going to happen...if there will be complications..leaving your child in other people's hands. Yes they are trained professionals but things happen.

Joe and I decided that we would do what we always do when there is going to be a long operation...we would walk to we did in silence, holding hands...gathering strength from each other.

It was hot and there was a nice river breeze so we decided to go and find a park bench on the river walk to sit on. When we sat down Joe saw written in chalk on the arm, 'God loves you...Jesus is Lord.' We felt this was a sign from God telling us that He was there in that operating table looking over Nick and the surgeons. There were also 2 seagulls who I named Fred and Fredda who kept us company. I always think of my dad who passed away in 2003 when I see birds as he liked birds and when my Mum was having a colonoscopy after Dad's passing, there was a bird tapping on her hospital window. I felt comforted to think that Dad was there too.

It was about 4pm when we finally got to see Nick again. There had been complications during the operation. His cheekbones were as thin as paper and had fractured so titanium plates were attached to them. These titanium plates were used also to help secure the wires into the cheekbones (which we didn't know he was having as Melissa didn't have them). He also had a lot of blood loss and needed a lot of blood.

We eventually saw him in PICU. I was able to stay the night beside the bed in a recliner as there were no parent beds available. He woke up during the night and had vomiting. He nose bled continuously from the bleed.

The next day his eyes started to close. We would not see them open for a few more days.

© 2012 by Jenny Woolsey
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  1. wow I remember the feeling of leaving my little one all to well its the worse feeling in the world i cried like a baby!!! 6 1/2 surgery we set and waited they would call out to the waiting room every hour to let us know how he was doing it was usually just a hes doing fine.. hes doing good .. Is the cheek bone thinning due to the courzon syndrome? Kaysin is 1 1/2 and has courzon so i really only know what ive researched on the web and i know there's more to it then what the web informs!!! He wakes alot at night i tried to research that the only thing i could find is because of the premature closure of his head it could be something to do with his air way???? Hope little nick is healing well and his time in the halo goes by super fast!!! thank you for your Facebook page and this blog!! gives me comfort when no one else can

  2. Thank you so much for sharing your experience. My 8 year old is currently wearing the RED frame. The surgery went well and things are progressing as planned. It has certainly been a bit of a roller coaster ride for all of us, but we are staying positive and laughing a lot. I would love to hear more about Nick's return to school - whether he did go back and things worked out, or whether you kept him home for the duration of the frame. We haven't made this decision yet, but will be soon. I am keen for him to attend some school over the next 6 weeks, but I don't want to push him too much and risk his emotional state.
    Re Tara's query above - no the cheek bone thinning is not specific to crouzon syndrome - it's just one of those things.