Comforts of Grace

Completely drained, confused and not knowing what to do or where to go next, we walked through the O.R. double doors and decided to return to Taylor’s ICU room to await his arrival from recovery. That room was temporarily home now. We were informed by the nursing staff when we arrived at his room, however, that he would be held in recovery for quite a while. As we waited in the quiet, empty ICU room, Chris said, “One of us should probably try and get some sleep in that sleeping room the surgeon reserved for us tonight.” I nodded in agreement, but knew I couldn’t sleep. All I wanted was to be near Taylor. “How about you sleep first and I’ll stay with Taylor,” I said, knowing my suggestion would not convince my husband. As suspected, Chris replied, “No, you sleep first and I’ll stay with him.” Since neither of us wanted to be apart from Taylor, we decided to at least check-in at the reservation desk since the surgeon told us the suite would soon be closing reservations fo

It was Thursday, June 15, 2006 and we waited for Taylor’s turn in the operating room to install the dialysis catheter. There were no changes overnight for hopeful signs of kidney function. I methodically checked the urine bag that hung at the bottom of his ICU bed as we watched, waited, and prayed for the precious return of what we called “liquid gold”. But, as was the case all week long, there was only about a tablespoon or two of a pale liquid that the nurses assured us was not good urine. The blood counts continued to show extremely high and rising creatinine and BUN counts associated with kidney failure. It appeared more certain he would need the dialysis as the kidney’s were refusing to function. By mid-afternoon, the operating room alerted the ICU staff they were ready for Taylor. He was wheeled down the hall in his ICU bed by the surgical nurses in green scrubs. They paused at the double entry doors to the O.R. so his dad and I could give him a quick kiss goodbye. T

The ambulance arrived at the emergency room doors of Riley Children’s Hospital at around 7:00 Monday evening, June 12 th , 2006.   Taylor was wheeled into a private emergency room and attached to monitors to record his vitals.   I was shocked to lay eyes on him again after the two hour drive from the transferring hospital. He was now extremely bloated.   His entire face was so swollen that he could hardly move his lips to speak.   His previously thin chest that clearly showed his sternum and every rib, was now so bloated that it looked like a barrel had been implanted inside his torso.   His hands and feet were so puffed I was afraid his fingers and toes might pop if it became any worse.   The hive blotches had also grown much larger over his face and body and now appeared to blend all together changing his pale skin to a deep reddish purple sea of welts.   If it wasn’t for his trademark curly, red hair he would be completely unrecognizable.  And then we waited. We waited for ho