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.
It does!
Just think of where Ryan has came from. He has been doing alot better than he has in the past. Thank God! My Prayers Continue each and everyday for Him and Strength be given to the family. May God Bless!
There’s no place like home.
This is a great anniversery and a sign of progress for sure. Great job Ken, Sue, Kari and friends!
Continue your loving care for Ryan. My prayer for Ryan continues.
Such an inspiring post! I think after reading this post, this week is the dogs week to strut, Duke lead the way! You the man Duke! Its all you!
Dear Ken, Thank God you insisted on bringing Ryan home…From the blogs I have read, he seems to have improved so much, even though some times it must have been so scary..You and your family did it and got thru so many crisies with Ryan. The medical procedures you have learned are unbelievable and have so helped Ryan..You should give you and your family so much credit. I do.. praying things continue going well and Ryan will heal completely GOD be with you all. ~ Gail
Your unconditional love echoes that of our heavenly father. Hopitals can provide great medical care, but your family has provided love and attention that institutions do not offer. You surround Ryan with the familiarity of his home, his pets, his friends; your constant presence; your loving hugs and touches. You are treating Ryan’s whole being, physically and spiritually. I feel that divine guidance has led you to wise decisions throughout this whole ordeal so that the best healing can occur. You have saturated yourselves with medical information and have shown unwaving courage as you personally perform procedures on your son that often require years in med school.
Your loving hands are constantly reaching out to Ryan and each other as you journey together into the unknown. One thing is for sure…..we’re supporting, praying, and loving your family, today and always. May our prayers surround and comfort you. And may God’s hands work through yours to restore health to your beloved son. Have a blessed day.
Susanne,
What an uplifting and beautiful post. Amen!!!
I love reading your posts, Susanne! I hope to get to know you better someday — somehow… …do you think you might be attending any of the events in Ashburn for Ryan? Hoping to meet many of Ryan’s supporters at some, at least one, of these events. We are in this together!
Susanne ,you say it all God bless
Always trust your instincts. You guys are amazing in your knowledge and ability to care for Ryan. This really should be put in a book someday! Stay strong, wishing you another peaceful day.
We are so thankful that God hears our prayers, and we know our hope is in Him. Yes, I know Ryan is better at home and so are you, Ken, Sue and Kari. Thank you with all my heart for your daily updates. Always here. Love