It all started Tues, July 11th, Caitlin was sleepy and spent the day in her room, something most teens do after work or school to catch up on sleep. Late that evening, she suffered a major seizure that continued even through her emergency transport to the hospital. To stop the seizure, heavy sedation was needed and she was put on a ventilator to breathe for her.
Cait has been in the Neuroscience ICU for 27 days now, still heavily sedated since the day she was admitted. She now has a tracheostomy to better accommodate the ventilation of her lungs. There is a diagnosis, but no specific cause. Cait has NORSE (new-onset refractory status epilepticus). Something caused this condition, but is currently unknown. She continues to receive the treatment protocol for this condition, which is complete sedation. We continue to wait for her brain to "reset" or "reboot" as she recovers from whatever it is that started this flood of seizures challenging her mind and body still.
These past 4 weeks of the sedated silent journey has Caitlin topping out at max levels for anti-seizure and sedation medications, receiving trial diets as her body revolted against a few), developing pneumonia, as well as UTI, and her body responding with daily fever spikes that raise her heart rate to unsafe levels.
Caitlin is funny, sensitive, loving, creative, driven, quirky, but most of all she loves--life, her friends and family. As a student at Sinclair College, she is passionate about pursuing her career in the healthcare field. She has amazing fortitude and brilliance as she maintains a 4.0 and is committed to working at least 15 hours per week at her job. Her note taking skills, problem solving, and excellent study habits are impressive. Using these skills, she takes the time to assist others with their studies so that they too can succeed.
We are now asking for help from others for our Caitlin. What has happened to Caitlin in the past 27 days has baffled doctors and consultants across the United States.
- No music, limited visitors, no phone, no television, no hand holding… all to foster no brain activity that would trigger seizures.
- Our world has been silenced as well, we have not heard her hearty laugh, seen the spark of genius in her eyes or been able to hug her quieted body.
Finding the source of this mysterious condition is just the beginning of the road for Caitlin. Once her brain seizure activity is stabilized, she will be very slowly weaned from the medication. After that, Cait will be on a consistent schedule of rehabilitation therapy to rejuvenate her muscles for walking, writing, talking, breathing and swallowing.
This fundraiser is to help offset the costs that have totaled thus far, from hospital, physician and lab costs, as well as future months of therapy, and for help with paying every day bills since Caitlin will be out of work with no income for an unknown amount of time as she recovers. Even with insurance, medical bills can be a major financial burden.
Here are the ways we are asking for your assistance:
1. Pray for directed pathways toward resolution to bring Caitlin back to us, body and mind.
2. To relieve the stress that Caitlin will carry on this journey, please donate to assist with her medical bills and cost of living.
3. If you know of anyone who has had similar symptoms, please share, this could be a turning point for finding the cause of the relentless seizures.
4. Please share Cait’s story so that through the network of prayer and financial assistance, Caitlin will receive the support that she would be willing to do for anyone else.
- Ashley Stewart
- AJ Jones
- Matt V
- Damian Farejowicz
Organizer and beneficiary
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