Hello, old friends! Remember this kid? Otis is 12 years old now, a 7th grader. He continues to stretch and grow like a weed, and is now over 5 feet tall and weighs in at over 100 pounds. With some recent changes to his medications, he has enjoyed improved seizure control over the past few months--still with daily seizures, but their duration and intensity have greatly decreased, as has recovery time. He's still not a great sleeper, but we are fortunate enough to have night nursing help three nights per week which gives us a little bit of much-needed nighttime respite. We're hopeful that our home health agency will be able to staff more nights for us again soon!
We are posting now to let everyone know that on Monday, December 11 (tomorrow), Otis will be admitted to Children's Hospital here in Colorado Springs for major reconstructive hip surgery to correct his bilateral hip dysplasia. In addition to intractable epilepsy (Lennox-Gastaut Syndrome), Otis also has hypotonic cerebral palsy. Because of his low muscle tone and inability to run around and bear weight on his own like a "typically" developing kiddo, Otis has developed progressive hip dysplasia, meaning that his hips have gradually been working their way out of socket, and if we don't take preventive measures now, he is at great risk for one or both hips to completely dislocate. This would be completely devastating, as there is nothing that can be done to repair a hip once this has happened. Otis would not only lose all hip function, but would spend the rest of his life with pain and severe arthritis as a result. His hips have been monitored closely by his orthopedic surgeons and rehab doctors over the past several years, and his annual x-ray this October revealed that his dysplasia has finally progressed to the point where we must intervene as soon as possible.
Although the underlying cause is a little bit different than what is shown here (no muscle spasticity for Otis), this video shows exactly the procedure that Otis will undergo:
bilateral (both hips) VDRO (varus derotational osteotomy) with pelvic osteotomy to reshape the shallowing of his right hip socket, and possibly his left socket as well. The procedure will last approximately 5 hours if all goes well, followed by a 4-5 day hospital stay. Once he is discharged, Otis will come home to recover. He'll be immobilized in an abductor pillow and knee immobilizers for 6-8 weeks while his hips heal. Once he is cleared to begin bearing gradual weight again, his orthopedic surgeon estimates it will be about a year of PT/rehab before he (hopefully) reaches full recovery.
In the meantime, we would happily take any prayers, good vibes, pixie dust, love, and healing thoughts that you all could send Otis’s way--specifically, that the surgery is successful, that we can avoid any complications, that the journey isn’t too painful for him, and especially that the bonds between his bones and the new hardware are strong enough to withstand his daily seizures. We are so fortunate to have access to the best quality medical care for Otis, and are so blessed and grateful to have each of you in his and our lives.
2 comments:
🙏🙏🙏
So glad you are proactive like this for him!
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