Baby Steps

Jordan is on his back in a hospital bed where he has been laying now for more than 3 weeks.  When I enter the room his eyes move toward me but his head doesn't move--he never moves it beyond a few centimeters in either direction when he shakes it from side to side.  He fixes his gaze as his hands reach for a piece of string hanging down beside his face for him to play with.  Most toys he holds for a few minutes and throws away.  The string, however, is a different story as Jordan feels around for it, grips it, and works through several attempts to push it into his mouth.  At last he is successful and begins plunging as much of the string as possible into his mouth like it is a conqueror's feast.  He would certainly swallow it if it wasn't tied to the crib.  After a while the string falls out and he begins his quest to devour the string once again.  

With so much of his body still ravaged by disease, Jordan moves only his arms and legs.  At 8 months he doesn't have the strength to sit up, turn over, or even lift his head.  He simply lays and waits for interaction from his family and his nurses and rewards those who spend the time with a fixed gaze, an outreached hand, and on occasion, a unique smile.  

For all Jordan can't do physically, however, he makes up for in sure will.  A leak around his stoma allows me to hear his struggled breathing.  Deep breath in, long breath out; deep breath in, long breath out.  He is once again unable to clear his CO2 properly and so his body exhales forcefully and his blood gas levels continue to jump up and down throughout the day.  Jordan doesn't seem to notice.  

I sit and hold Jordan for another few hours while Heidi and the kids watch a cartoon in the waiting room.  Unless the child is dying, kids under 10 aren't allowed in the hospital rooms, so Heidi and I take turns holding and caring for Jordan throughout the day and spending time with our other kids.  I am grateful to have more focused time with each of them.  

Around 8pm we see what we think is pee mixed with blood filling his diaper.  After weeks of no progress with his kidneys, even pee mixed with blood is a good sign.  The Attending Physician for the night watch confirms it is pee and that provides our hope for the day.  "Baby steps" we remind ourselves, "baby steps".