Flashes From the Past

I'm writing from day five at NYU where Cesare is undergoing his kazillionth Video EEG.  He's graduated to the adult floor, having turned 18 last week.  The folks are friendly and knowledgable.  Staff from the pediatric world a few floors below have popped in to say hello.  For us, these folks are more like family than I care to accept.  We've spent whole months at a time here in years past.  But Cesare has been so predictably stable since his last surgery in 2008 that we've had no need to step back into the world of sleepless nights, and the frightening sound of an entire team of running feet racing to a fellow patient's room where seizures may be more life threatening than Cesare's have ever been.  There but for the grace of God.....

                                   

Cesare seems to have lost his stability.  That's why we're here.  That and this is the next step toward consideration of the RNS implant. We've not captured the newer, more intense seizures during this visit.  What the docs have captured has not convinced them he is a shoe-in for the surgery.  He's not out...but he's not in.  Ces and I discussed all the possible permutations of more data collection in this pursuit.  It would likely include opening him up again to get more clinically accurate EEG data.  I told Cesare I didn't think that was a risk worth taking, again.  But now he's 18.  It is his decision.  But, I'm getting ahead of myself.  We have another test to do before the surgical review team will even consider him.  

Tom and I have found ways to make these long stays bearable.  Most of those "ways" involve food.  Italian deli; Thai delivery (to the foot of the bed!), and now a Fairway market at the end of the next block.  If you are unfamiliar with Fairway and the like, it is an orgy of smells and tastes including both an olive and an olive oil bar, a cheese department and a bakery that will lay you out flat.  

To work off some of the idle, culinary, weight gaining hours yesterday I took the stairs down from this, the twelfth, floor.  Yes, I understand that taking stairs DOWN twelve flights is not as advantageous as taking them up, but we won't quibble.  Walking down I was reminded of the photos I saw during Hurricane Sandy two years ago.  Most patients were evacuated before the storm hit, but very critical patients remained.  When the first floor flooded and the generators blew, the remaining few hundred were carried, or "sledded", down these stairs to waiting ambulances who carried them off to neighboring hospitals.  

I think all nurses are heroes and saints but the crew here is outstanding.  And on that night marched up and down countless flights of stairs in the dark just doing what they do.  

NYU is rebuilding.  Signs of improvement are everywhere including new elevators that now get you to the highest floors on the SAME DAY.  And plans are in the works for a new pediatric hospital, though they've been talking about that since we first started coming here ten years ago.  But, the East River, just steps away,  isn't going anywhere anytime soon.  What are they thinking?  

I noticed something while Cesare and I have been roomies here this week.  I'm far more patient with him.  I don't bark and I definately don't bite.  I was thinking about what makes the difference.  When I'm home I am driven to "get things done".  I am laser focused on completing tasks and crossing them off my list.  From this distance I can see how meaningless that is.  But at home, it seems that's the best I can do.  Cesare can't understand that kind of shortsightedness.  Because his is shorter: just what's here and just right now.  There is no list of things to tick off.  There is no need for him to feel he has accomplished anything.  

I head home today.  Tom takes my place and likely will bring Cesare home tomorrow once his regular med regime is restored and he's back to regular functioning, whatever that is.  

I'm sure I'm not alone in this, but it is the not knowing that sets me on edge.  I worry that the predictable seizure life we've lived is being tossed into a blender.  I worry that a new implant won't be an option after all.  I worry that Cesare's life will be short and unhappy.  Me and every other aging parent on this floor.  We pass each other in the halls.  Tense, tired and silent.