Help Kaitlyn Heal: Post-Surgery and Recovery Costs
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Kaitlyn is our 20-year-old daughter who is having her 3rd surgery in Dec for her brain/spine. Kaitlyn has had headaches/migraines ever since she was young. In the spring of last year, she was diagnosed with Chiari Malformation Type 1. In June 2023, she had Chiari decompression surgery. There were complications, and she had 4 dural tears/spinal fluid leaks that had to be repaired, which meant another surgery. It was 2 weeks in the hospital, most of that time in ICU.
After surgery, Kaitlyn had very limited motion in her neck. The pain was better for a short time. As soon as she started to regain motion, her head/neck pain returned. Her pain has been continual and unbearable since then. It has been over a year of extreme pain, countless medications, procedures (occipital blocks/joint ablations), imaging, scans, a CT myelogram which caused another CSF leak and took a blood patch to fix, dozens of doctor appointments, and multiple ER visits (some by ambulance). To say it's been a difficult year for her is an understatement.
Kaitlyn also has EDS (Ehlers-Danlos Syndrome) and has extreme hypermobility. Her joints throughout her body hurt. We saw a neurosurgeon at Johns Hopkins earlier this year. He told us everything Chiari-related looks good, but it sounded like a strong possibility of cervical cranial instability.
CCI is very difficult to diagnose. She has had all the imaging possible. We finally were led to a neurosurgeon who specializes in EDS and CCI cases at Weill Cornell in NY. He gave us such hope. He does a surgery with 3 other surgeons, and they have come up with a surgical protocol that has had great success! It involves fusion of the skull to C3. Our insurance approved it very quickly (which we are very thankful for), so we have a surgery date and are headed to NY!
NY is pricey, especially in Dec, for airfare and lodging. Surgery is Dec 3. If all goes well, Kaitlyn will be in the hospital 5 "ish" days, and then recovering 7-10 days until cleared to travel home to TX. Optimistically, we are looking at 14ish days in NY. But it is a VERY long road to recovery after that. She will be in a collar/neck brace for many months until everything fuses together. There are different risks involved for such an invasive surgery, but we are trusting Jesus for a successful surgery, supernatural fast healing, and that all the details and finances come together.
Thank you so much for considering donating to help cover costs for Kaitlyn's journey to healing after surgery. All funds raised will go towards airfare, lodging, meals, and miscellaneous transportation. Thank you for reading Kaitlyn's story. I know many people have been following it. And thank you to every single person that has prayed for her/us on this journey. We are so hopeful that after this surgery, Kaitlyn can live life again pain-free! We will continually post updates on here as she has surgery and recovers.
Organizer
Rachel Jenkins
Organizer
Keller, TX