Our "Why"
Shared by Michelle Budreau
I just wanted to share why CHCS is a great place, and to remind staff not to forget their WHY they do what they do.
Last summer my daughter had her sports physical with Deb Rezac. During, she noted my daughter had a slight curve to her spine. I voiced we had noticed it last time as well, so Deb ordered an Xray. The Xray showed slight curve with the start of mild scoliosis, so we talked about repeating the x-ray in 6 months.
I then met with Andrea Lutz, whom is a physical therapist and asked if there were any exercises for scoliosis to keep it from getting worse. Andrea then put me in touch with Jen Hutfles, PT in Holton, who has special training in exercises and scoliosis. Jen drove to Onaga to meet with my daughter and I to discuss exercises. We talked about how the scoliosis could be at its peak, but since we didn't know if she was done growing, we would not know for sure. She recommended we make an appointment at Children's Mercy's Scoliosis Clinic.
We finally got an appointment at Children's Mercy in the winter. At that appointment the doctor concurred she did have mild scoliosis with 10% spine curvature. The good news was she was almost done growing. However, the curve was not going the way consistent for scoliosis, so he ordered a full spine MRI. He was comfortable with us doing the MRI at Onaga so we would not have to drive back to Kansas City.
Rachel in Radiology was so wonderful with my daughter, put her at ease and answered any questions. We don't do full spine; so, Rachel had to do three (3) separate MRI's which took 1.5 to 2 hours. My daughter stated Rachel was so kind. She even took a nap during the testing; she was so relaxed.
Follow-up after the MRI showed my daughter has Chiari Malformation 1, and we were referred immediately to a neurosurgeon. At that appointment, the physician reviewed and detailed the issues, with the big on being two fluid filled pockets on her spine, caused by pressure from her brain. Because of the size of both pockets, it will cause irreversible spinal cord damage if we did not intervene. He stated many times we were so lucky because if we would have waited until major signs and symptoms appeared it would have been too late. She could have had loss of bowel and then possible paralysis for life.
I am so grateful for the wonderful people who helped us along the way. It would have been so easy to just say no we don't need to anything. It's not bad enough and we will just watch it. I don't think people understand how continuity of care is so important, how just sharing what you know helps another.
I just want to thank you all for sharing your knowledge and not being afraid to say it. Thank you for listening and caring.
This mom and daughter will be more grateful than you will ever know.
Her surgery is schedule for June 5th, Prayers are welcomed. We are hoping this first surgery works, there is a 10% chance she may have to have a second one.
| 
