Tonight he gets a regular night's sleep and tomorrow he gets 100 mg less meds again, some exercise on the rowing machine and yes a second night of sleep deprivation - as he says this will make for a very very long shabbat. All this to induce a small (hopefully) seizure so that the docs can get enough data to decide if he truly is a good candidate for surgery. The challenge is that the doctors are very concerned that the seizure they induce will be status like in the past and very hard to manage. Today she said again that inducing this seizure could cause him harm. Still either we wait passively for the next seizure to hit out of the blue as in the past, or we induce it in a monitored and controlled setting with the hope to get the data we need to plan out a possible path for significant recovery.
Toren spent the day getting a neuropsychological exam which is part of the data necessary for the surgery panel which will determine whether he is a good surgical candidate. He is eating less, which is great, in part because the meds that have been withdrawn were interfering with the ability to feel sated.
Fiona came in for a visit today, and we sat out in the sunshine enjoying people watching and a particularly good lunch. It is such a blessing to have friends and to be able to feel the warmth of the sun and the joy of companionship, and yes the edge of tension removed by a glass of wine. Toren also enjoyed his visit with Eve and Elliot the other night, and a whole afternoon of hanging out with my mother who took the train down to be with us on Thursday. We played rummikub and simply enjoyed being together. Family and friends, what would we do without you all. Helaini and Lily are planning on visiting over the weekend. Visitors make the world of difference, in hospital it is easy for each day to become simply a continuation of the previous one. We mark time by the experiences we have, and here the difference of days is marked by a changing of the IV access, the reduction of a medication, the thrill of 20 minutes on the rowing machine (which Toren was rather disappointed with - it was hardly state of the art exercise equipment... ah to be back at the Y - or even better for him, back on the water in a real scull.). However, because of those who love us, the visits of our dear ones, we have the gift of something to look forward to, and a vital link to the other world which so easily shrinks and almost disappears when we spend day after day in a hospital.
And for all the boredom, the fear, the waiting, there is the bounty... shared time with Toren, scrabble games, and yatzee... switching desserts with the patient in the next bed, trading stories with other families who travel a similar path. There is trash pail 'basket' ball, and holding Toren's hand while we watch yet another episode of CSI. There is the joking with the staff... as Toren fakes 'seizure' faces, or makes one more punny - it can even be a blessing to explore the hospital menu... tonight's question - are Saltines still Saltines when they are low sodium?
Then there is the darkness, the waking up and wondering if this is the day he will seizure, if saying yes will cause a damage that is unbearable to live with, the sense of being held in limbo - of praying for that which we have been trying to hold at bay, the waking in the wee hours with questions to ask doctors, and knowing that most of them are unanswerable. And so we go into this second Shabbat in NYC waiting and grateful, scared and courageous, but more than anything we go in to Shabbos with full hearts, and hope and the knowledge that we are loved and held by all of you. Shabbat Shalom
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