Harrison's hospitalization is caused by C2 stenosis, which means narrowing of the spinal cord, from a unknown mass on the C1 vertebra. He had an MRI at Mary Bridge that showed both the narrowing and the mass and it was decided to transfer him to Seattle Children's for the better pediatric neurosurgery department. The mass likely existed back in 2017, it barely shows on an old brain MRI but wasn't noticed at the time because that area wasn't being imaged or assessed. It has been eating away at the bone creating instability at the top of the spine. Because of Harrison's AHDS, he doesn't have very good head and neck control and anytime he hyperextended his head forward or backward over the years it was doing micro-trauma to the spinal cord. Every time he had an extension during a medical procedure (sedation, anesthesia, physical therapy, etc), it was further damaging his spine. Think of it like a fraying rope: his cord isn't severed but it is damaged.
The origin of the lesion is still in question but it was likely due to a combination of loose spinal bones/ligaments and a sudden loss of control of his head that resulted in some trauma (sadly this is all too common with AHDS). Harrison will be having several surgeries to investigate the lesion, stabilize the spine (fusing the neck), remove the lesion and reinforce the C1/C2 vertebra best they can.
He is in spinal shock so he's essentially paralyzed right now while his body tries to heal, although an ultrasound of his abdomen did show he's retained the ability to use his diaphragm effectively. Since the injury is at C2 and he still has the ability to take breaths, it indicates that the lower spine is only partially affected and that some of his paralysis might reverse with time. Sadly, there is no way to know for certain. He is stable and able to breathe on his own currently, but in preparation for his upcoming spinal fusion surgery, the team has decided to be proactive by establishing a secure airway now. They need his airway protected & stable before he has such a long & complicated surgery that the lesion biopsy & stabilizing his C1/C2 will be, as it's expected to take between 6-8 hours.
This morning around 10:30, Harrison will undergo surgery for inserting a tracheostomy and we appreciate prayers for an uneventful procedure. He will need about 5 days to heal from his trach placement before they can fuse the damaged area in his spine. During that time, he will be mostly resting up, focusing on nutrition and getting as strong and stable as possible before the next surgery takes place. We so appreciate you all keeping our little guy in your thoughts and prayers, and will keep this page updated as best we can in the next day and week.
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