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?