"I'm asking the state not to quit on me." - Patrick Stein
Patrick Stein is a 20 year old young man whose life changed in the blink of an eye on 10/10/10. Patrick, who was once a water polo captain, had a brain stem stroke and now has Locked In Syndrome. He is now completely paralyzed except for the use of his eyes and eye lids. Though he cannot speak, he is 100% present and communicates with eye movement. There was no damage to his cognitive skills, sense of humor or spirit -- as his former nurse and a friend and neighbor, I can attest to that!
Patrick currently receives skilled nursing care at his home through a State of Illinois waiver program operated through the Illinois Department of Healthcare and Family Services. The care provided by these nurses keeps Patrick alive. Without them he is at risk of losing his life. His care is so complex, and his condition so labile, without the care of a skilled nurse, critical changes will go unnoticed and Patrick could die.
Patrick recently had his tracheostomy tube removed. He still has an opening in his throat that connects with his trachea -- this opening is called a tracheostomy. Because the tube was removed, the State of Illinois has downgraded his level of care and on July 16, 2013 his nursing care will be stopped. But there is NO change in the care that Patrick needs to stay alive.
The state's alternative is to pay for care in a nursing home. It is impossible to provide the level of care Patrick needs in a nursing home. If he is transferred to a facility, he will die. Patrick does not have the ability to call out or trigger an alarm. If he is in pain, danger, frightened or suffering in any way, he cannot get the attention of his caregiver. In a nursing home, he will not have the constant care that ensures he is safe. Patrick needs this care.
My life changed the day I met Patrick. Working with him has been one of the most challenging and amazing experiences of my nursing career. Over the past three years, I have received so much more than I've given. Patrick has a great team of direct care nurses, allowing me to step back and enjoy my role as friend, neighbor and back up nurse. It is a privilege to know this incredible young man and his family. It breaks my heart to think the state of Illinois could be putting Patrick in such a dangerous situation.
Patrick is an incredible young man whose spirit has never wavered. Please help us petition the state to reverse their decision and give Patrick a fighting chance to live, heal and continue to grow into the amazing man he is destined to be.