JACK OTTENS will NEVER SAY DIE!!!
Donation protected
Berwick (Melbourne), Victoria, Australia
How do you live knowing any day you could die? His entire life, but only knowingly for 6 years (for him) he's existed in the midst of a minefield. It's real, it's scary, it's nearly killed him already, and how he manages to function at all shows how brave, courageous and determined he is. Jack has amazing support from his family, friends and his medical team. The family give up anything they have to in support of Jack but have run out of resources. His friends, young children, have learnt of sadness and fear in an adult context but have never deserted him. Some members of his medical team tell us they have his picture on their office wall. That office hours don't apply. They take calls after hours and on vacation. That they take Jack home with them. He's in their head. They worry about him, they think about him, they dream about him. We refuse to give up! And we hope....
May 2016
It started with a headache. It came on suddenly. He progressed to vomiting, couldn't stay awake, became confused and delirious with his limbs wracked by muscles spasms that even made him sit up in his sleep. He became non-responsive. His big brother by his side, holding his hand and crying. The moment had arrived. The moment we had dreaded every single day for over 4 long years. Our little boy was leaving us. We said our goodbyes....
Little Jack is 9 (and a half). He is sweet, considerate, funny, cheeky, a constant surprise and charms all who have the pleasure of meeting him. He is gifted, a member of Mensa and hopes one day to work at NASA. He also has an imminently life-threatening medical condition.
Jack was born with a condition called a Complex Deep-Brain AVM. It was discovered during an MRI following a serious head injury when he was 5 where he incurred Post Concussion Syndrome (Shell Shock). An AVM is where the capillaries are missing from the vein system so in a part of his brain the blood is flowing directly from the arteries into the veins and the veins can't handle the pressure and could burst. It would bleed for just a few seconds before the vein concerned closed up again, but it would be enough. We were told that if that happened there was not a lot that could be done and that it would most likely be fatal because of Jack's age and the location of his AVM. It was predicted to happen at any time by the time he was 10. Getting him to help urgently was the only chance he had. We were also told that it could happen at any moment, that there was nothing he could do that would cause it to rupture and nothing we could do to prevent it. That proved to be the case this day and the hospital were left with very little time to save his life before transporting him by ambulance to another hospital for emergency surgery. Now that it has happened Jack is at an increased risk of it happening again during the next year - starting out at a higher risk and tapering off as the year progresses - before returning to the risk he was at before...yet this risk rises every year.
It has been difficult helping Jack to deal with his Post Concussion Syndrome, getting him past two bouts of Scarlet Fever and learning of and coming to terms with his AVM and resultant brain damage that followed radiation in an attempt to shut down the veins that left him feeling constantly sick and anxious. The stress is unimaginable and we are exhausted financially and emotionally. Last week Dad thought he was driving off the exit ramp of the freeway - it wasn't and he wrote the car off.
If anyone wants to follow his journey this is his page https://www.facebook.com/Jackottensaus/
UPDATE 8/9/17
JACK
Jack had just started to get back to school after a very long recovery and we had organised a birthday party for him with his friends. While he was playing with his friends a headache came on which slammed in hard an hour later and he started to vomit. He had to leave his own birthday party in an ambulance...another rupture. We couldn't transport him this time as he was vomitting uncontrollably. Luckily for us the ambulance (the only one at that depot) had just returned from another call. It was a long ride from Skye all the way to Monash. Though the Neurosurgeons were initially very concerned this rupture was not as bad as the first but still required 5 days in hospital on observation in case the blood moved and he needed emergency surgery.
When Jack returned home he fell into a deep depression. With two bleeds so close together he was constantly scared of another. He would get up in the morning, move to the couch and hide under a blanket while he played on his Ipad. Trying to shut out the world and his problems. Anti-depressants were brought onboard with dosage increased 3 times and Psychologist visits became and remain weekly.
Sleep became a major issue with Jack scared that he would suffer another bleed in the night and I would not wake up in time. Though it doesn't always work he is now on up to 4 tablets of 3 different sedatives to help him sleep.
His Neurosurgeon no longer allows him to play football which upset him greatly. He now plays golf.
School - he had been doing really well this year, attending almost full-time (not factoring in medical apointments) but a virus, anxiety over impending treatment and a fractured ankle have knocked the strenght out of him and he has barely attended for well over a month now.
A medic alert dog is being trained for Jack that he has been working with for a while now. She will go everywhere with Jack - school, sport, if he has to catch a plane she'll be with him at his feet. Everywhere. If she alerts it will be an ambulance or car immediately to hospital. She will sleep with him to help ease his anxiety and hopefully get him off the sedatives. She will be with him throughout the day to distract him whenever he is getting anxious or stressed and let him know he is safe. She is moving in 19th August 2018.
How do you live knowing any day you could die? His entire life, but only knowingly for 6 years (for him) he's existed in the midst of a minefield. It's real, it's scary, it's nearly killed him already, and how he manages to function at all shows how brave, courageous and determined he is. Jack has amazing support from his family, friends and his medical team. The family give up anything they have to in support of Jack but have run out of resources. His friends, young children, have learnt of sadness and fear in an adult context but have never deserted him. Some members of his medical team tell us they have his picture on their office wall. That office hours don't apply. They take calls after hours and on vacation. That they take Jack home with them. He's in their head. They worry about him, they think about him, they dream about him. We refuse to give up! And we hope....
May 2016
It started with a headache. It came on suddenly. He progressed to vomiting, couldn't stay awake, became confused and delirious with his limbs wracked by muscles spasms that even made him sit up in his sleep. He became non-responsive. His big brother by his side, holding his hand and crying. The moment had arrived. The moment we had dreaded every single day for over 4 long years. Our little boy was leaving us. We said our goodbyes....
Little Jack is 9 (and a half). He is sweet, considerate, funny, cheeky, a constant surprise and charms all who have the pleasure of meeting him. He is gifted, a member of Mensa and hopes one day to work at NASA. He also has an imminently life-threatening medical condition.
Jack was born with a condition called a Complex Deep-Brain AVM. It was discovered during an MRI following a serious head injury when he was 5 where he incurred Post Concussion Syndrome (Shell Shock). An AVM is where the capillaries are missing from the vein system so in a part of his brain the blood is flowing directly from the arteries into the veins and the veins can't handle the pressure and could burst. It would bleed for just a few seconds before the vein concerned closed up again, but it would be enough. We were told that if that happened there was not a lot that could be done and that it would most likely be fatal because of Jack's age and the location of his AVM. It was predicted to happen at any time by the time he was 10. Getting him to help urgently was the only chance he had. We were also told that it could happen at any moment, that there was nothing he could do that would cause it to rupture and nothing we could do to prevent it. That proved to be the case this day and the hospital were left with very little time to save his life before transporting him by ambulance to another hospital for emergency surgery. Now that it has happened Jack is at an increased risk of it happening again during the next year - starting out at a higher risk and tapering off as the year progresses - before returning to the risk he was at before...yet this risk rises every year.
It has been difficult helping Jack to deal with his Post Concussion Syndrome, getting him past two bouts of Scarlet Fever and learning of and coming to terms with his AVM and resultant brain damage that followed radiation in an attempt to shut down the veins that left him feeling constantly sick and anxious. The stress is unimaginable and we are exhausted financially and emotionally. Last week Dad thought he was driving off the exit ramp of the freeway - it wasn't and he wrote the car off.
If anyone wants to follow his journey this is his page https://www.facebook.com/Jackottensaus/
UPDATE 8/9/17
JACK
Jack had just started to get back to school after a very long recovery and we had organised a birthday party for him with his friends. While he was playing with his friends a headache came on which slammed in hard an hour later and he started to vomit. He had to leave his own birthday party in an ambulance...another rupture. We couldn't transport him this time as he was vomitting uncontrollably. Luckily for us the ambulance (the only one at that depot) had just returned from another call. It was a long ride from Skye all the way to Monash. Though the Neurosurgeons were initially very concerned this rupture was not as bad as the first but still required 5 days in hospital on observation in case the blood moved and he needed emergency surgery.
When Jack returned home he fell into a deep depression. With two bleeds so close together he was constantly scared of another. He would get up in the morning, move to the couch and hide under a blanket while he played on his Ipad. Trying to shut out the world and his problems. Anti-depressants were brought onboard with dosage increased 3 times and Psychologist visits became and remain weekly.
Sleep became a major issue with Jack scared that he would suffer another bleed in the night and I would not wake up in time. Though it doesn't always work he is now on up to 4 tablets of 3 different sedatives to help him sleep.
His Neurosurgeon no longer allows him to play football which upset him greatly. He now plays golf.
School - he had been doing really well this year, attending almost full-time (not factoring in medical apointments) but a virus, anxiety over impending treatment and a fractured ankle have knocked the strenght out of him and he has barely attended for well over a month now.
A medic alert dog is being trained for Jack that he has been working with for a while now. She will go everywhere with Jack - school, sport, if he has to catch a plane she'll be with him at his feet. Everywhere. If she alerts it will be an ambulance or car immediately to hospital. She will sleep with him to help ease his anxiety and hopefully get him off the sedatives. She will be with him throughout the day to distract him whenever he is getting anxious or stressed and let him know he is safe. She is moving in 19th August 2018.
Organizer
Christine Ottens
Organizer
Berwick, VIC