starienite
Mouseketeer
- Joined
- May 25, 2011
*Devon's TR is located here*
Welcome!
This is the PTR for my son Devon.
Devon was born, unknown to us, with a Cerebral Arteriovenous Malformation (AVM). An AVM is when the connection between arteries and veins is a tangled mess, the technical term is nidus (Latin for nest). The American Stroke Association has an excellent explanation. http://www.strokeassociation.org/ST...enous-Malformation-AVM_UCM_310099_Article.jsp
So back to Devon. This was Devon on 12/18/10:
Then at 3:30 in the morning on New Years Day, 12 days later, my husband woke me up telling me that he can't wake Devon up. I tried everything, cold water in tub, yelling, slapped his face. Nothing. He mumbled and postured, but never fully woke up. We called 911 and waited. When they got there, they thought that maybe he had a seizure, or undiagnosed diabetes because his blood sugar was through the roof.
We were taken the hospital where by this time he had stopped talking, but still moving. They did a CT and found bleeding in his brain. They didn't know what caused it and he needed to be life flighted 70 miles away to the Children's Hospital. Luckily my parents lived only a few miles away so we had someplace nearby to stay.
Devon had pressure building in his brain so they had to drill a small hole in his skull and insert a tube to release the blood and spinal fluid creating the pressure. For 12 days this what Devon looked like:
During those 12 long days he was in a medically induced coma. He had MRI's and CT's confirming AVM in his right Thalamus that measured about 2.3 X 1.5 cm. When his ICP was under control they were able to wake him up. He spent the week or so withdrawing from the pain meds they used to make him sleep. Said some pretty funny things.
Devon was then transferred to different hospital for an embolization and brain surgery.
Devon the day before surgery with Tiger the therapy dog.
The embo and surgery reduced his change of re-bleed to 5%, but they couldn't remove the all of the AVM without damaging his brain. So in March he had a procedure called Gamma Knife (http://www.stjosephs-phx.org/Medical_Services/Comprehensive_Cancer_Center/SJH2_M086596 <-----video).
During his medically induced coma, I discovered that his condition may be eligible to Make A Wish! Oh boy did it take a while to get everyone on the same page. Not faulting MAW in anyway just that when they would call the doctor we gave them Dev wasn't there patient anymore, but no worries it all worked out.
This is Devon today
He is wishing to go Disney World, meet Phineas and Ferb, and skip every single line. We are hoping to go in February or January, or April (last choice).
This is his spunky, lovable, imaginative, smart, clever, beautiful sister Cassidy
Meeting our wish grantors
Semidates
Getting our dates!
The more the merrier!
Christmas was great for the trip!
It is coming sooner than I realized.
We have our flight info!
Inspirtation Through Art
First Big Give Package!
Finally Open!
2nd Day of Big Give Arrivals!
Lots of Big Give Today!
Friday's Big Give!
Dev finds out when he is going!
Monday Big Give Bonanza!!!!
Video of Devon getting the news
Bit of a mom brag
Devon's Big Give Thursday Delivery
Big Give from the Great White North
What the postie brought today
Giving Back
Surprise Mail on Monday
Welcome!
This is the PTR for my son Devon.
Devon was born, unknown to us, with a Cerebral Arteriovenous Malformation (AVM). An AVM is when the connection between arteries and veins is a tangled mess, the technical term is nidus (Latin for nest). The American Stroke Association has an excellent explanation. http://www.strokeassociation.org/ST...enous-Malformation-AVM_UCM_310099_Article.jsp
So back to Devon. This was Devon on 12/18/10:
Then at 3:30 in the morning on New Years Day, 12 days later, my husband woke me up telling me that he can't wake Devon up. I tried everything, cold water in tub, yelling, slapped his face. Nothing. He mumbled and postured, but never fully woke up. We called 911 and waited. When they got there, they thought that maybe he had a seizure, or undiagnosed diabetes because his blood sugar was through the roof.
We were taken the hospital where by this time he had stopped talking, but still moving. They did a CT and found bleeding in his brain. They didn't know what caused it and he needed to be life flighted 70 miles away to the Children's Hospital. Luckily my parents lived only a few miles away so we had someplace nearby to stay.
Devon had pressure building in his brain so they had to drill a small hole in his skull and insert a tube to release the blood and spinal fluid creating the pressure. For 12 days this what Devon looked like:
During those 12 long days he was in a medically induced coma. He had MRI's and CT's confirming AVM in his right Thalamus that measured about 2.3 X 1.5 cm. When his ICP was under control they were able to wake him up. He spent the week or so withdrawing from the pain meds they used to make him sleep. Said some pretty funny things.
Devon was then transferred to different hospital for an embolization and brain surgery.
Devon the day before surgery with Tiger the therapy dog.
The embo and surgery reduced his change of re-bleed to 5%, but they couldn't remove the all of the AVM without damaging his brain. So in March he had a procedure called Gamma Knife (http://www.stjosephs-phx.org/Medical_Services/Comprehensive_Cancer_Center/SJH2_M086596 <-----video).
During his medically induced coma, I discovered that his condition may be eligible to Make A Wish! Oh boy did it take a while to get everyone on the same page. Not faulting MAW in anyway just that when they would call the doctor we gave them Dev wasn't there patient anymore, but no worries it all worked out.
This is Devon today
He is wishing to go Disney World, meet Phineas and Ferb, and skip every single line. We are hoping to go in February or January, or April (last choice).
This is his spunky, lovable, imaginative, smart, clever, beautiful sister Cassidy
Meeting our wish grantors
Semidates
Getting our dates!
The more the merrier!
Christmas was great for the trip!
It is coming sooner than I realized.
We have our flight info!
Inspirtation Through Art
First Big Give Package!
Finally Open!
2nd Day of Big Give Arrivals!
Lots of Big Give Today!
Friday's Big Give!
Dev finds out when he is going!
Monday Big Give Bonanza!!!!
Video of Devon getting the news
Bit of a mom brag
Devon's Big Give Thursday Delivery
Big Give from the Great White North
What the postie brought today
Giving Back
Surprise Mail on Monday