Surgery tomorrow, but not the one we expected…


This photo included because A) Ben had the best night of his life on the dance floor and B) to remind myself our hospital selves are not our permanent selves.

Complete Tracheal Rings Update: We’ve been to visit the airways team at Cincinnati Children’s twice since my last update and have another date on the books for early January. The doctors feel Ben is on the very edge of needing tracheal reconstruction, but the surgery is so dangerous and the recovery so difficult that they want to continue to wait and watch. So that means we will continue to return to Cincinnati for bronchoscopies every 3-5 months for the foreseeable future. I’m so acutely aware of Ben’s stridorous breathing. It’s nails on a chalkboard to my ears. But, opening his little chest – that’s already been opened for heart surgery and has scar tissue and sternal wires – to reconstruct that little trachea is no small feat. So medical trips are our new norm and I’m learning not to put our life on hold “until we find out what Cinci says.” It’s terribly hard to be at the mercy of the hospital’s schedule. I had to miss Carter’s kindergarten graduation during our May trip (many tears shed over this) and leaving town during the first week back to school in August was not easy. We were told to come back in December but I asked to have it pushed to January. I do have my limits.

In the meantime, and the real reason for a new blog post, is Ben’s recent diagnosis of a tethered spinal cord. A few months ago, we learned Ben’s incontinence is not just part of his developmental delays, but he truly has no control and may actually be in pain when he urinates. This finding led to a spine MRI, which showed a spinal lipoma, small cyst and tethered spinal cord. A normal spinal cord moves freely within the spinal column. As the name suggests, Ben spinal cord is attached (tethered) near the base of his spine and therefore being stretched as he grows. Without surgery to detach the spinal cord, continued strain would lead to progressive neurological and motor impairments, including paralysis. Our neurosurgeon told us this ideally would’ve been repaired as an infant, and unfortunately Ben may not regain bladder function, but here we are with a five-year-old boy just thankful he’s alive.

During our August trip, the airways team and neurosurgeon agreed it’s safe for Ben to have spinal surgery at our local children’s hospital. Special precautions will be taken with Ben’s airways and an ENT will be on-call during surgery and recovery. Ben will likely spend 3 days sedated and lying on his tummy in the PICU to prevent cerebrospinal fluid leakage, then 2-3 more days recovering on the neuro floor. During Ben’s heart surgery in China, his caregivers were not allowed to be with him during his recovery in the ICU. Our little one-year-old Ben was all alone in the hospital! So we count it a privilege to sit by his side during this recovery.

Who knew so many surprises could come in one little package?

I’ll be posting updates on Instagram and hope to get in a blog post or two during our stay.

“Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope.” 

                                                                            ― Maya Angelou


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