Wednesday, September 8, 2010

It's not what you know...

It's who you know. Heard that before? Well it is certainly true in my little world.

Because Tricky didn't need emergency surgery we had to get him referred to the Craniofacial team. But that's not as easy as it sounds, you have to get a GP to refer you to a paediatrician, then the paediatrician has to refer you to the Cranio team - it's a nightmare of red tape that you need a $600 whipper snipper to get through.

Friday 27th August
I had to see a different GP than the one who discovered the closed fontanelle. He read the x-ray report - I don't know whether he was trying to make me feel better or he really thought it but he said he'd give me the referral even though he didn't think it would need any intervention, that it was just a natural variation of 'normal'. However he then said he'd have to look up what some of the words on the report meant. Riiiight. So you don't know what the report says but your medical opinion is he's fine? Forgive me if that doesn't put my mind at ease. It was now after 5pm so I'd have to wait til Monday to call a paediatrician.

Monday 30th August
The GP had given me an open referral meaning I could go to whichever paediatrician that could fit us in. I called seven different paediatricians and the earliest appointment I could get was mid October! To say I felt disheartened is a massive understatement, so I did what I do when I feel upset and can't do anything about it... I called my Mum. I've always said that between my Mum, my Aunty and my Uncle, they know the whole of Perth. She sprang in to action and through 'a friend of a friend of a friend' and three phone calls, Tricky got his appointment scheduled for THAT WEDNESDAY! Hooray! My six and a half week wait had turned in to two days.

Wednesday 1 September 
Waiting in the fabulous Dr Vercoe's rooms we wondered where all the other children were only to be informed that it was actually his day off and that he came in just to see us! He had a look at Tricky's skull and in his opinion it had some of the signs of a fused suture so he said he would walk over the referral to the Craniofacial unit that afternoon. They see patients on a monthly basis so it would be about four to six weeks to get an appointment there. I wasn't worried, I'd been reading (of course I had, it's all I do) and had discovered that if it is discovered before six months of age then the type of surgery is much less invasive, so at just under three months we had a little bit of time up our sleeve.

Friday 3 September
It was 8.30am and I was getting ready to go to my mother's group when the phone rang. It was the PMH Craniofacial department - they had read the referral and wanted to see him as soon as possible (because the cut off date for the smaller surgery is actually four months) and a spot was available that morning if I could get in by 10am. I was so glad I was already dressed and ready to go! Again my big wait had turned in to a matter of days!

Tricky was seen by the surgeon and sent for a CT scan. I was worried about the scan because if he moved and they couldn't get a clear picture he'd have to have a general anesthetic to keep him still. So I gave him a big feed so he'd be milk drunk and he was so perfect, even with the machine whirring and clunking! What a champion! The result was as the surgeon expected, his saggital suture has fused and will need to be opened to take pressure off his brain and to stop his head from becoming deformed.

In the next week we have lots of appointments and will be spending most of our time at the hospital - there is a neurosurgeon consult (because they operate so close to the brain), an anesthetist consult, 3D scans, 2D pictures, blood tests, head measuring and a tour of the ward he'll be staying in. Then, one week from today, Tricky will have his surgery - four weeks earlier than the first available appointment at the other paediatrician.

Today was the first time since standing in the x-ray place two weeks ago (being offered tea) that I've cried. My eyes welled up when I was talking to my best friend - the whole thing became more real as I explained the surgery to her. I'm not sure if my calm, cool and collected demeanor is a sign that I'm coping well or in denial (or possibly just a heartless bitch?). I'm sure I'll make up for the current lack of tears when he's in surgery though because it doesn't matter how many times I tell myself he is in safe hands I know I'll be a wreck and blubber until he's back in my arms where he belongs!

Have you had a child go in to hospital? What methods (other than a big box of aloe vera tissues) did you use to cope?

3 comments:

  1. Dr Vercoe is freaking awesome. He was fabulous when we had trouble with Kass after her birth.

    ReplyDelete
  2. Hi :)
    My son had to have an operation on his feet because he had clubfoot and he needed to have achillies tendon cut and then both legs recast for two weeks.
    I know it is nothing compared to the brain but i know how it is to have them go away from you under Anesthesia all soft, bbut you need to have faith and it will all be fine.
    I know its hard, with the 3D photos, 2D photos, xrays etc etc and weekly hospital visits.
    it will all be fine, and so will your little tricky :)
    best of luck
    Emma

    ReplyDelete
  3. Geez... When I have a kid and I need something quick, I will be blowing up your phone! Hahaha!

    Thats great everything worked out!

    ReplyDelete

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