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Jackson's Chiari journey

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Jackson's Chiari journey

Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from Jackson's Chiari journey, Medical and health, High Street Randwick, Sydney.

17/04/2022

Happy Easter to those who celebrate it happy Sunday to everyone else
Had a busy day today Jackson woke full of beans an ready to see if the Easter bunny had come
Pain is still a constant issue for him but if he thinks he will miss out on anything he will hide it so it makes it hard..
He enjoys showing off his scar
But sometimes worried that it will always feel like it does now
But we visited his uncle an auntie then a walk to the markets then off to see the steam train
Both him a jemma weren't super impressed with the smoke and noise hahaha but lots of chocolate and cuddles today was a good day

16/04/2022

Slightly better day today pain wise hopefully will have more good days then bad but seems to be adjusting well.
Both Jackson and jemma enjoyed some time with visitors today and had a lovely moment when jem was upset and he layed with her till she started laughing it's these moments we live for

15/04/2022

Tough day for Jackson today. Lots of pain and discomfort.

He has done lots of resting

❤️❤️❤️

13/04/2022

Siblings have been reunited ❤️❤️❤️❤️ they missed each other so much.

Jackson had a good day today. His dressing was removed and we were able to see his incision which was quite a bit bigger than we realised.

Jemma came home which was so so lovely we all missed her so much.

Jackson's pain seems manageable although we are struggling to really know as he is refusing pain medication. He only had 1 dose of nurofen today.

We just have to trust he is refusing anymore pain medication because the pain isn't too bad. It definitely isn't slowing him down that's for sure.

12/04/2022

We are home been home for almost a day and Jackson is settling in nicely was a stressful discharge yesterday with Jackson randomly goin colour blind for 5 minutes before he was back to normal (may of been the level of pain he was in) and a 3 hr wait for discharge meds. a long drive made better by a short stop over at the amazing ange's house for a coffee.
Then a long long drive of "how long till we are there" and a lot of counting (see video).
Will try to do a post of an overview of our time in sydney an will update as Jackson hits his goals in his recovery.

11/04/2022

Home ❤️❤️❤️❤️

It's a different type of anxiety but so much relief.

1 week in Sydney
1 brain surgery
1 brave boy

So many emotions to process.

10/04/2022

Jackson was up very late last night he didn't go to sleep until after 10pm.

I may or may not have fallen asleep before him only wake up to him watching YouTube at full volume 😐😐😐 anyway if we stay another night melatonin will definitely be charted in his medication schedule.

He was awake just before 6am and already going around the hospital in the wheelchair to try and let the other people in our room have some more sleep.

Again these are positive signs he is on the mend and getting back to being Jackson.

10/04/2022

Why did Jackson have brain surgery?

Some people might not know why or what surgery he had so I'm going to try my best to explain it.

Jackson has a brain condition called Chiari malformation.

This means a part of his cerebellum that they refer to as tonsils had descended down into his spinal column. Impacting the flow of spinal fluid/brain fluid and creating crowding around his brain stem.

Some people can have this condition and never have any symptoms. Jackson has been getting headache for as long as he could tell us, weakness in his legs, pins and needles in his hands and a few other symptoms which over the last 6 months were getting worse.

His tonsils descended 24mm past the foramen magnum where they are meant to sit. This was discovered via an MRI last June.

He received an MRI immediately prior to surgery showing a further 2mm drop and significant crowding.

The surgery is called a craniotomy decompression surgery.

They made an incision on the back of his skull, moved the muscles, removed a 3cm by 3cm section of his skull. Went into the dura (protective layer of the brain) detached the tonsils from his c1 vertebrae also removed the bones that make the c1 vertebrae.

They then shrink the tonsils to create more space.

They place an artificial patch into the dura to seal it.

The piece of skull was then placed back in and attached loosely with 4 plates and 8 screws all titanium.

The muscles are moved back into place and then he was sewn up with dissolvable stitches.

All with the aim to create more space which they have done successfully.

And now Jackson just needs to focus on recovering and hopefully some of his symptoms will improve 🤞🤞🤞🤞

10/04/2022

Day spent playing and resting. Not alot of eating but Jackson is in good spirits. We are starting to discuss discharge.

Dressing needs to be removed and clearance from physio must be done before we can go.

Neuro team is happy with his recovery.

Life going forward looks like lots of quiet play time.

Keeping a close eye on the wound.

And Making sure he stays pain free.

We are all looking forward to our own beds and being close to our families ❤️❤️❤️❤️❤️

09/04/2022

This woman.....
What can I say about this incredible amazing fantastic woman.
The strongest sweetest person I've met and I am the lucky one to call her my wife, she has dealt with watching her first born her baby boy go through a terrifying/and painful situation.
she has stood by me when I cracked and couldn't hold it together... no she didn't just stand by me she held me up
She is struggling. this is hard for her and she powers on when I don't think even I could.

She deals with her second born her baby girl being away from her for the longest time in her life and she hurts but she keeps on keeping on.
She let's it go when she needs to but she stays strong

This woman is my rock
This woman is my life
This woman has my heart
This woman I'm so lucky to call my wife

Plain an simple I couldn't do this without her.
My kids wouldn't be the amazing kids they are without her (may not have half the attitude either though 😉)

These pics were what I walked into this morning when I hot to the hospital was lucky to be able to see these 2 getting a lil bit of rest (sorry bout the darkness)

09/04/2022

Jackson had a good night's sleep last night.

He is a bit of a high maintenance patient 🤣🤣🤣 complains about the bed, wants his own bed sheet, complaints when the nurses wake him up for observations hahaha 🤣🤣

He woke up in alot of pain at around 5am but we managed to get it under control with Panadol and he went back to sleep until 7am.

I did cop a punch to the face when we tried to take his temperature at around 11pm.

All positive signs he is feeling more himself

09/04/2022

This is really tough

Being so far from home is really hard. Being so far away from Jemma is hurting my heart.

Not having our support system close by is hard, but knowing we have support from everyone is so much comfort. The messages and phones calls make everything a little bit easier.

This whole situation sucks and I wish our baby didn't have to go through this.

Jackson's strength, courage, resilience and bravery is inspiring and he keeps me going.

Tim is such an amazing dad and husband. He is handling everything so well and he is doing such an incredible job at keeping us both safe, happy and looked after.

This is really tough, but I'm tougher 💪🏻💪🏻💪🏻💪🏻

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High Street Randwick
Sydney, NSW

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