recovery at Home

Tt doesnt finish once out of Hospital, lots of recovery time on the couch. the body and head are sore and the energy levels are almost non existement......
We have 8 weeks of close care to ensure he does not fall and bang his head, any small 'bang'can crack open the mending skull ..so we are very careful to make sure he is always with someone.

Plenty of nausea, dizziness and headaches are accompanying us as we leave the hospital and they firmly ensconce themselves in our house with Joshua LOL

we never ever realised what brain surgery was going to do....such a significant thing to do to anyone, let alone our son



getting ready for home

2 weeks in Hospital

2 major Neurological operations -7 hours and then 9 hours

its time to leave on a Sunday

the last operation was 9 hours long and a decision was made to remove 4cm from the RH fornt temporal lobe

its a non functional part of the brain and it was a ht or miss proposition that there maybe was a trigger point for the Epilepsy in that spot. so after much discusssion we decided to remove.

little did we know what we had released..........

its just a pane of glass.....

Extended time in hospital does differant things to differant people.

I am always fascinated by the glass of a hospital window- on one side of it a world is normal with people going about their daily life with absolutely no understanding of what is happening on the other side of that pane of glass......

one day some ballons landed outside our window!

our toughest time

Well the surgery is over and so its back into the ward for 7 days of recovery.

Pain management and halting nausea is the main tactic to look after him-
some of the things happening were  headaches, migranes, plenty of nausea and amongst other things sore jaw- the cut some muscles to get into the LH side of the brain....

So all up- its recover, watch and care whilst in hospital.

Very surreal time for us all and you can clearly see in this image the scale of what they have done to him and also how bloody miserable he is

Operation number 2

9 hours this time and its a bloody long wait! Josh is in recovery and slowly coming around

After 7 days of testing and working out what is what in the brain on the Sunday we were given the bad news of nothing really found that looks as like it is the trigger for all this Epilepsy. pretty upsetting to know he has gone through all this for no positive outcome...

We then had a follow up meeting on the Monday which looked at some significant activity coming out of the front left lobe- it was decided to remove a 4cm portion, with fingers crossed we hoped it took away the trigger.....

Recovery is -another week in hospital as the brain is healing and the very soft skull is left to recover and so its back to the ward

9 hours was a long long wait

Family moments

mother and child

big brother

Day 6

Here we are on day 6 in the RCH
you can get a good shot of the 96 wires coming out of the top of the head, which are attach the computers for monitoring brain functionality and also where the é is coming from

Nurf gun is a must for shooting wayward grandfathers  who dont abide by the rules!

Not long now until the doctors come back with what the next step is- the wired and open skull can only be in for about 7 days, after that there is a risk of infection....
so operation 1- implanting is done on Tuesday
and operation 2 - removal and resection is the folowwing Tuesday

...who would have thought that operaton 2 was looming?

Hospital support crew

note the black eye and sorround- its from the first operation.

family during 14 days of hospital were running a program to be there at all time to entertain, assist and be there for games or comfort

whether ts night or day we were always with Josh to be at hand if he needed it.

One important item for extended hospital days is the DVD player we take it- along with some great movies its a good distraction.

V is for Victory

Day 2 after the first surgery

feeling pretty sore and sorry with things

and we are struggling to hold of pain and nausea

another 5 days in bed before its back in for a bigger operation

Over 7 days in a bed

96 wires coming out of the head

and a drain for fluid as well.

2 jobs

map the functionality of the brain- where are all the working parts located

also

work out the exact spot where the E is coming from

pain and nausea was a real fight to control

Into the Ward

its up to the 8th floor for rest and recovery after a long operation.

he is now plugged into a video and monitor which watches and records the brain activity when he has a siezure/s and tries to accurately pin point where it is coming from precisley in his brain.

96 wires all nicely bundled up and attatched to a machine and also a drip bottle to take excess fluid off the brain...

recovery takes well over 48 hours until he starts to feel human again

lots of pain, headaches and nausea.

and its a challenge to work out which drug helps the pain without causing too much nausea

7 hours later....

in recovery 7 hours later and how his and our world has changed

operation goes smoothly and we are now plugged into the machines will 96 cables out of a point in the skull.

Joshua has travelled through this in his usual style- brilliantly!

recovery takes somewhere around an hour as anyone who has had a major general and then its up to the ward....

Into Surgery.....

here we go, the first surgery lasts 7 hours and its to implant 96 electrodes or plates across and into the brain

at this point joshua is normal and feeling pretty happy with the world

Recent Surgery

to try and stop the "E" it was decided to map the brain to try and locate the area in the brain causing the problem

so its into the RCH for 2 weeks of and 2 major surgical procedures

here we are before surgery

marking the spot

gowned up- its off for an MRI first.

in the last 3 years Joshua has had many many MRI's to try and locate the problem

apologies for the blurring pics- its a nervous dad and a shaky i phone

but guess who aint shaking....he gets to watch Disneys "Cars"while lying next to the mega magnet!

A little life in need of help

Hi There

Here is Joshua Charles Grey

born 7the October 1999 and he lives in Melbourne, Australia

besides being the youngest of our 3 amazing children -

 he is battling something that  turned up about 3 years ago- Uncontrollable Epilepsy

Prior to this joshua had been growing up as a fantastic normal kid and enjoying life, friends and family.

for the past 3 years or so we have tried many many drugs and tactics to halt the "E"but to at this stage.....no luck.

In this blog i am going to share our recent attempts to halt his many many daily siezures

so hold on....for this ride has many ups and plenty of downs but one thing is an absolute....

.......Joshua is an amzing kid