Hard to believe, but it was one year ago today that stopped his daily “storming”. Although Ryan continues to have bouts of this, it no longer occurs several times every day.
Storming (also called brain storming, neurological storming, or parasympathetic storming) is how brain injured patients often cope. It is, for lack of a better explanation, the mind and body in chaos. It’s the “fight or flight” response in overload.
Ryan spent up to 18 hours every day in extreme pain. He displayed nearly every symptom know to storming: hyperthermia (fever), posturing (i.e., the body in spasm/contorting in unnatural positions), high blood pressure (near/at stroke levels), profuse sweating, and elevated heart rate (commonly above 180 beats per minute).
All that could be done was to treat the symptoms. We packed Ryan in ice and literally threw ice water over his body. We had fans cooling his body, as he was stripped naked. He would get morphine and propofol for the pain, but it rarely helped. He was on beta blockers and blood pressure medications to (somewhat) control his heat rate and blood pressure. Every time he stormed, which was almost all the time, he was at risk of dying. We lived in constant fear. He lived in constant torment. Moaning in unrelenting pain. He could be heard throughout the hospital floor crying out.
One year. 365 days. It seems like yesterday and, at the same time, seems like an eternity ago.
Ryan was at Shepherd Center in Atlanta, GA when this was all going down. Although initially reluctant, I convinced Sue that Ryan would be better off at home. Shepherd was in over their heads. They never had a patient as critical as Ryan, and they didn’t know how to handle it. But we did. We learned how to best care for our son. I wanted complete control of his care, and the only way to accomplish this was to get him home. That we did, despite every conceivable roadblock. Including a blizzard and a less than capable Case Manager. He was coming home, hell or high water, despite the doctor’s objection.
So, Ryan is flown home on an air ambulance (after being diverted to Dulles because Leesburg airport shut down) to an immaculately clean house that was polished by members of the community. Ah, home! After three months, we see our home again. We are greeted by Dr. Rodriguez and his nurses as Ryan is storming. We are scared. No doubt, we are terrified. But, we let our instincts and education kick in and get Ryan under control.
The next two days bring more storming, but I never doubted the decision to bring him home. We smother Ryan with love and affection. I stretch him endlessly. Sue and Kari massage his entire body without cease. The dogs lay with him. They lick him. They comfort him. Ryan is home, and I still believe he felt it.
Then, without any advanced indication, the daily storming stops three days later. We hold our breath to see if it will last.