Finally, after 20 days spent in my local hospital (mostly in the ICU), a hospital-to-hospital transfer was approved. My parents and the case manager at my local hospital worked tirelessly to get me to Rhode Island for my much needed surgery. I can’t reiterate enough how grateful I am to have so many fighting for my health/my life.
Nevertheless, the travel to Rhode Island was extremely difficult. On the day before my surgery, I was taken by ambulance to the airport (20 mins away). The movement of being transferred to a stretcher and the bumps/jerks from driving had me in tears. Even the slightest movement or turn would result in my screaming.
There were three people transporting us: a pilot, and two nurses. The nurses checked my vitals about every 15 minutes and monitored my IV ketamine drip and fluids. Thankfully, once we were on the plane, they raised my ketamine which knocked me out for most of the flight. The pressure change from flying usually escalates my headache, so I was very grateful to be asleep.
There was only one additional passenger allowed, so my dad came with us. My mom flew commercially and arrived the same day as us. When we arrived at the airport in Providence, the 911 ambulance crew took me to the hospital and everyone was extremely helpful in getting me situated in the neuro ICU.
The neuro ICU team at Rhode Island hospital was tremendous. The nurses were interested in learning more about EDS and treated me with so much kindness. Doctors in the unit told me that they believed I knew my body best therefore we should collaborate when deciding what pain meds/doses to use. This was a completely new experience for me.