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Annie Mangelson

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Surgery 2023

October 19, 2023

Lydia had surgery yesterday—it went well. We’d planned 3 surgical procedures & two tests—a full schedule. Anytime Lydia has any procedure done that requires anesthesia it’s a big deal. Her low tone puts her airway at risk, & her pacemaker requires additional modifications & precautions. The entire surgical team makes adjustments, bringing in extra staff members & using special meds to ensure her safety. Part of the reason we piggyback as many items as possible when she is sedated is because it’s such big deal—we like to do it as LITTLE as possible. Her doctors are wise & carefully evaluate benefits v. risks. Yesterday her ENT pivoted in the moment & decided the riskiest procedure was unnecessary, & though that was a significant change in plan, we trust his judgment.

Being a medical mama is difficult. I have been through many surgeries & it’s strange knowing that we will inevitably go through many more. It’s even STRANGER having a relatively specific date for some of them—we’ve had a ⏰ ticking since the day Lydia’s pacemaker was implanted. I walk into the surgery waiting room, stare at the benches & chairs, & think, “Ah yes. You, again.”

It is not an easy thing to send your child off behind heavy hospital doors knowing you can’t follow, no matter how capable the arms of those that carry her. That distance is so far. That pull is so agonizing. That wait is so restlessly long.

And the hospital, I have learned—speaking of the healthcare experience generally—is never easy. Never smooth. Never without heartache or trauma. No matter how simple the procedure or how short the stay, this is a place of pain first, then healing.

Five minutes after they took Lydia back, a code blue went out over the intercom. It broke me. There are unspeakable things… things you see, things you experience, things you feel. And we have. That moment hit them all. Like so many, I have a hospital past that lives in me—trauma—& while my mind knew my baby was probably ok, my body didn’t. My memories didn’t. We found a room & I collapsed. Cried. Put myself back together, while somewhere someone else worked on my daughter. And somewhere else, another team rushed to save another life.

This is the hospital. These were some of the thousand thoughts that flooded my mind in that moment. In addition to how when you’re in a hospital all that’s outside the walls fades away & you don’t care about sides you just care about LIFE & your loves & why is this the one place we can actually SEE?
Today we are home and I sat on my bed and combed Lydia’s hair while she sang to Taylor Swift. I gently pulled her strawberry strands back and noted her ears full of blood from yesterday’s surgery. My own body has been sick from the stress, but we are home and happy. We were discharged with a list of aftercare instructions, some prescriptions, some emotional bruises, and a reaffirmation of the quintessential hospital lesson: We are the lucky ones because we have each other. A little bit of pain, a lot of healing.

In Extraordinary Tags Down Syndrome, Medical
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