After a cancer scare and and emergency craniotomy, Sam was diagnosed with cavernous angioma, a heritable condition that causes an overgrowth of small, tangled veins in the liver and brain. As frightening as the diagnosis was, we were thrilled when cancer and infection were ruled out.
Sam's brain lesions bled, causing serious and life-threatening symptoms. The frontal lobe lesion was removed during brain surgery, but the remaining lesions continue to cause significant and potentially deadly affects. The brain stem lesion is no longer bleeding but it is surrounded by blood, putting pressure on a part of the brain that controls basic functions like heart beat and breathe.
We found out the hard way that recovery from a brain injury is not a straight path. After returning home to my care, Sam suffered from many setbacks. He had severe insomnia. His motor skills, speech and swallowing deteriorated. His blood pressure skyrocketed and he aspirated food and drinks. It was and is unclear how much of this is due to surgery complications and how much is simply the result of a large mass on is brain stem.
On September 26th, while resting in bed with our little boys, Sam had a small seizure and stopped breathing. My sister-in-law Leyli and I did CPR. Sam was rushed to the hospital and put on life-support.
Today Sam is in the ICU. He has a brand new tracheostomy. It is possible that his brain stem will heal enough that he will breathe on his own again.
Some sufferers of brain stem angiomas recover fully. Others do not. We are in a painful place, waiting and hoping for the best outcome.
With the help of friends and family and even some people I have never met, we are managing constant care for Sam and for the kids. However, even with health insurance, the medical expenses will be significant. Additionally, Sam's family medical leave is limited and once it runs out, we will be without income.
Thank you so much to everyone who is helping us through this difficult time.