December 17th 6:40pm
Just shy of 2 weeks in the hospital, we were all more than ready to leave the hospital. Unfortunately, we were not heading to the long-awaited comforts of home, but left the hospital parking garage to drive directly to NYC for a second opinion scheduled for the following morning.
As much as I had so deeply wanted to just rush out the hospital doors with William and pretend the previous 2 weeks had not happened, I sincerely recall how scary it was to even think of leaving the hospital. In some sense, the annoying vitals every 4 hours around the clock, the bothersome daily bloodwork at 4am, the oncologist's exams at daily rounds (as brief as they often were) and even considering how little I felt like my opinion was respected regarding William's needs... being at the hospital did give me some sense of security. At least he was finally getting the attention he needed for as sick as he was and at least the experts were paying attention to my baby's health. All the sudden, I questioned if I could take care of him...everything seemed so incredibly different two weeks later. I had every imaginable fear rushing through my mind uncontrollably.
Fortunately, in some odd fashion, our time frame was so tight to make it to our 11am appointment at Memorial Sloan-Kettering Cancer Center the next day, we had barely enough time to pack up our mini hospital apartment and get on the road.
William seemed to sense this trip to his favorite elevator was different than the others.
Our frequent evening nurse, Melissa gave us our final dressing change training (literally, just minutes prior to us leaving) and wrapped up our discharge orders. It was a rush to get us out the door -just 2 hours prior to this, William was under anesthesia for the second day of his MIBG scan and an endoscopy and colonoscopy performed by Dr. Karjoo.
Clearly, William recognized his old familiar spot in the car.
A hour and a half into our trip, a notorious poop explosion required a stop. Suddenly, the realness of all that we had been through seemed to hit us like a ton of bricks during that car ride to NYC. As good as it felt to be "free" it seemed as though our lives would never be the same again...
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