Little man’s brain surgery recovery

My best friend has allowed me to set up a go fund me to support her trying to get the financial support to help with achieving a wheelchair friendly garden for her little boy And in the very expensive task of purchasing some much needed sensory equipment.

yesterday she was told they are not leaving the hospital for at least another two wks but realistically it’s going to be more likely a while longer because he is in need of intensive rehabilitation.

the surgery and what it entailed.

The reason for surgery.

Eashen has PVL along side interactable epilepsy with 5 different types of seizures including drop attacks. Myoclonic jerks. Absences. Complex partials. And tonic clonic seizures.

His epilepsy is not controlled with anticonvulsants despite being on 4 types. And because of this it leaves his quality of life Hugely impacted and his safety severely impacted. As a result of hundreds of seizures daily.

This surgery was performed to slow his seizures down enough for him to save himself for hitting and hurting from his epilepsy.

Eashen on Friday the 26th of under went a full corpus Callosotomy. The reason the operation was given is because eashen brain was being hugely damaged by the seizures he has. He was no longer allowed to take baths. Walk up and downstairs (hence our stair lift being fitted) he was struggling with every day living and requiring his rescue medication more then any adult should have let alone a six year old little boy.

The surgery involved a large sideways incision being made from ear to ear. His brain was then separated in order to gain access to the section of his brain they needed remove. But in opening him up they discovered he had severe fusion of the connective fibres of the two sides of his brain so before they could proceed they had to remove those fibres. The surgery went really well until the went to close when he then suffered a cerebral Hemorrhage. The bleed took a little while to contain and figure out where it had come from and turned out to be the result of him being on a certain anti-epileptic drug called sodium valproate. Eashens recovery is nothing we anticipated or were prepped for,infact a lot of patients who have this surgery are actually fully back to normal with in three wks. Unfortunately for his family he fell into a small percentage of people who just don’t bounce back as quickly.

Where theyare now!

Eashen can not stand or walk and therefore is bed bound unless in his chair. He has little control over his body so slumps right so is now high risk for lung infections because it’s crushing his right lung meaning air isn’t getting in properly….this slumping occurs even when in his chair so the bed is more suitable for him because we can support his rights side with pillows and he’s only allowed in his chair for small amounts of time. He can not eat orally so is now what they call drip fed for 20hrs a day from a pump. They tried to go up to 100ml an hour yesterday and it resulted in about 600ml of his milk coming back up last night, this means he isn’t now digesting his milk and is at about 3kg in weight loss so far. His speach is comical (sheena says “I can say this I’m his mum”) but he’s doing three very abnormal ways of talking. Word finding( replacing the words he wants to say with words with words from his library making his sentences hard to understand for example this morning I’ve had cup sock mummy home ) Hyper mode (Talks lots of random words and sings sentences really quick for an hour) staying silent because his brain just can’t get his words out for him. He also is repetitive so …..1,2 buckle my shoe is his favourite go to speech at the moment. His fatigue wins and takes most of his day away too so he spends only a small window of the day awake making his rehabilitation harder because he simple can’t do it if asleep or very tired.

Sheena has been very reluctant at being completely open and honest about how bad things really are for her precious boy but that’s because eating one watsit crisp yesterday was a huge achievement as his mum sitting by his bedside. She is struggling to stay positive when it’s two steps forward and one step back on a daily. Everyday is different but still the same.

We would love for them to be granted wknd leave. But in order to do this they would need a hoist from the stair lift to his bedroom and bedroom to bathroom. They also need a ramp out the front as the front entrance is steps. So if we can get the garden sorted she can set him up in the lounge for the wknd and wheel him straight in from the drive way. As it is now we stand no chance of the hospital granting us leave with no safe or suitable access for him at home. Thank you to anyone who shares and/or donates from the bottom of my heart xxx