From Surgery to Sunlight: Our First Weeks of Recovery
On August 26, 2025, Shaina went into the OR for Chiari I decompression and right jugular decompression. It was the surgery we’d been preparing for all year — the hope we’d been clinging to after years of pain, nausea, ER visits, and unanswered questions.
The surgery itself was complex. Dr. Bolognese reduced her crowded cerebellar tonsils (one stacked on top of the other in a skull that was simply too small for everything it had to hold). That uncovered an area at the back of her throat and tongue that had never received proper blood flow before — her brain and body are still adjusting to this “new normal.” He also worked to decompress the right jugular vein, and plastics closed carefully to give her the best chance at healing with hEDS.
It was successful — but that was only the beginning.
PACU Limbo & Emotional Toll
Complications started almost immediately: a rare post-op brain swelling “flare” required two CT scans, though thankfully it settled down. What didn’t settle down was her hospital status. Because of an ICU “traffic jam” and the need for a special bed, Shaina stayed in the PACU (Post-Anesthesia Care Unit) for three long days.
That separation was brutal. Visits were short, and the uncertainty weighed on both of us. Shaina recorded her own video during that time: her voice raw, her frustration boiling over. She said she wasn’t okay — not because of pain, but because of the emotional toll of being left in limbo. She shared how broken our system has become: overcrowded hospitals, patients waiting in hallways or PACUs, and the fallout falling hardest on those who need care the most.
Advocacy Wins & A Room of Our Own
By August 28, we’d had enough. I sent an email to Dr. B and his office. Within hours he was at Shaina’s bedside, then on the phone with me, and suddenly things started moving. Before I could even pack our bags, Shaina was in her own room.
That first night together felt like oxygen. We watched Singin’ in the Rain (surprised to remember Rita Moreno’s cameo), and I cracked an Exorcist joke about her required hourly head turns. She laughed. After everything, hearing her laugh again was medicine.
Early Recovery Struggles
The next days were about building strength in inches:
Swallowing & Speech: Hoarseness and phlegm were first blamed on nerve damage, but ENT later confirmed her vocal cords are weak, not paralyzed. One cord in particular may take up to six months to recover. Her tongue also remains weak — veering left when she sticks it out, tiring quickly through the day, and making swallowing difficult. Pills are still hard. She tolerates dry, “flattened” foods best. Wet textures like pudding or applesauce are a no-go. Speech therapy will continue outpatient.
Blood Pressure: Shaina’s blood pressure crashed repeatedly at night, sometimes as low as 75/43 outside the hospital. The panic alarms and interventions became a nightly routine. Our working theory now is that some of her pre-op prescriptions may no longer be necessary post-surgery — which could be a silver lining. For now, she manages dips with midodrine, sodium chloride, and extra fluids, while we wait for more guidance from her doctors.
Physical Therapy: To be cleared for discharge, Shaina had to prove she could walk stairs (our Airbnb has them). She passed that with flying colors, walking 250+ feet in the process. Her “reward” was an insurance-approved walker.
Masking & Safety: We had to advocate hard for infection control. Our homemade signs were taken down the first night, and staff debated whether she even counted as immunocompromised (!). After pushing with the charge nurse, hospital-issued signs went up and compliance improved. The trade-off was a few curt attitudes, but we’ll take health over popularity any day.
Discharge: Fresh Air & Ocean Air
On September 4, after 11 long days, Shaina was finally discharged. She hadn’t felt fresh air or sun on her face in nearly two weeks.
So what did we do first? We grabbed her prescriptions, picked up pizza (on the nurses’ recommendation), and drove straight to Ocean Park Beach. We kicked off our shoes, put our feet in the sand, felt the sunlight, and yelled at the ocean. That’s what freedom felt like.
Now we’re staying at an Airbnb near the hospital for three weeks. It’s expensive, but it has amenities we need and keeps us close in case of setbacks.
Where We Are Now (Sept 15)
Recovery is slow, uneven, and ongoing:
Tongue still weak, with saliva pooling on the left side.
Swallowing still challenging, though some progress with certain foods.
Speech remains impaired, but therapy is lined up.
Migraines have increased — at least three in the past 10 days. Forward leaning brings forehead pressure; lying too flat pushes it to the back of her head.
Chest pain in the mornings when waking or sitting up.
Blood pressure instability remains the biggest hurdle — our #1 question for her doctors right now.
But there is progress too. The nausea that plagued her for months is much better. She’s walking more each day. Her voice, though still hoarse, is stronger than it was in those first few days.
What’s Next
Getting the stitches removed!
Speech Therapy
Ongoing ENT follow-up.
Monitoring blood pressure closely, awaiting guidance from her care team.
Building strength through PT and daily walks.
Continuing advocacy — because if we’ve learned anything, it’s that the fight for proper care doesn’t end once you leave the OR.
Thank You
Through every scare, every sleepless night, every laugh we managed to find, we’ve felt carried by you. Your donations, your prayers, your messages — they’ve been the scaffolding that’s held us upright.
We’re out of the hospital. We’re breathing ocean air. We’re facing new challenges. But for the first time in a long time, we’re focused not just on surviving — but on healing.
💜 Thank you for walking this road with us.
#SaveOurShaina #ChiariAwarenessMonth #ChiariMalformation #hEDS #MEcfs #DisabilityJustice #MyWifesFightIsMyFight #StillHereStillFighting