Day 18 & no meds on board

There are long gaps in my writing because it is hard to communicate in the face of the waiting at the brink. The seizure did not give sufficient data for a surgical path to be clear... so another seizure is required. As of last night Toren is off all his seizure medication. Now we wait again... and pray that this seizure will also be manageable and give the necessary info to the doctors. Toren is amazing -truly an inspiration... he remains steadfast and upbeat. He is on two consecutive nights of sleep deprivation and playing scrabble with me.

The Morning After

The sun is shining brightly through the windows and Toren has just had a thorough neuro check... the doc found no obvious losses from this seizure. Wow!! He had a hearty breakfast, having missed dinner last night, except of course the 2:30am munching on part of the dinner he missed. Understandably Toren is very tired, 2-3 minutes of seizing is very high energy drain, however he is also alert and aware. He is so pleased to have finally had a seizure, and to have come out of it so well. The doctors will round later this morning so we will be able to understand more about the nature of his seizures and how to respond.

For now Toren is happy to simply rest quietly and feel the relief of making it through. In the wee hours of the night when he really came round he still a little confused, but when he was told he had a seizure, he said "finally - success" ... and then immediately asked did enough get captured on the equipment. He is presently on a portable monitor, so yesterday afternoon when he was very perky and high energy Toren really enjoyed showing David how his actions were reflected on the screen... by meditating and closing his eyes, and then by thinking scary thoughts, and then of course being such a boy, thinking other thoughts - those ones have the most dramatic shift in the pattern of the brain waves... what a surprise!!

I slept here last night... meaning I dozed in every hour for some of the hour... but I feel okay, apart from the gritty-eye sensation. I am watching him like a hawk, just in case another seizure is lurking. I am both anxious and keen to hear what the doctors have to gleaned. When the tech came in to fine-tune the reception from his electrodes this morning, he said "well now you can go home." Toren responded, "I didn't come here to go home, I came here to fix this!!" Toren has been a well balanced mix of patient and determined, and I couldn't be more proud of the way he has handled himself this past fortnight. I didn't know my grandmothers - but my father often quoted his mother as saying "Anyone can be a mentsh in good times, but can you be a mentsh in tsuris." By that measure, and many others this man, is a mentsh.

Each day he remembers to ask about those he loves, and knows, he is concerned about Lindsey his newest friend sharing this journey, about Josh who is up on the 9th floor recovering from brain surgery, and about Sarah who just had surgery yesterday. All these fine young people with serious challenges, they are truly inspirational. Heightening for me the need to count blessings, and ride the waves that life presents... challenges are truly opportunities once we stop resisting. May the way you meet today's challenges open up your hearts.

Finally

Well after 13 days and lots of weaning and waiting, Toren finally had a grand mal seizure this afternoon. The staff were amazing calm, and efficient - managing to get Adivan on board within 3 minutes of the seizure starting, Toren is resting restlessly and quite out of it... but he could squeeze my hand on command and said Mummy when I asked who I was... it took time, but that is fine. Now we wait to see if the Adivan is enough to prevent another seizure, and the doctors observe what is recorded on the video and the EEG and then we can start to make educated choices as to a plan of treatment.

I am so grateful to be here, to have been with him, to hold his hand, to rub his back, to whisper words as he goes through the cruel punishment of a seizure attacking his mind and body. Given our reality, there is no place I would rather be. Early this afternoon Toren had a great visit with David Hodgson, lots of laughter and chatting. He was working on translating hebrew when the seizure hit... having fun searching the on line dictionaries. Terri Fraser, a new friend whose daughter was sharing this side of the room with Toren until yesterday, came right over from her side of the hospital and hung with us for a while. All along this journey we have been blessed. Even in that Toren had his seizure while resting in bed rather than all those trips to the loo... he has truly attentive guardian angels... and all those prayers from all of you... thank you. I will be staying here at the hospital tonight, and holding his hand, counting my many blessings, wise, careful doctors, loving friends and family, strength of spirit, dedicated and talented nurses.

Toren even held off seizing until I got to see a broadway show... that's what you call honoring your mother... of course if I had known I would have gone last week. Thank you for your prayers and loving thoughts.

M

Day 8 at NYU Langone Med Centre - Shabbat is coming

It is hard to grasp that we are here for 8 days already. Toren is in surprisingly good spirits. The doctors and nursing staff are amazing... this is their specialty on the floor and yet Toren, true to form, is a little mystifying. As of today they have removed 1,400 milligrams of meds. from his daily dosage! And amazingly Toren is not seizing. What does that mean?... hard to know even for these docs. except he might be able to function on less medication once we leave here, even though they might not stop the seizures... because we don't really know yet why the seizures hit. The result is that Toren is feeling feisty even on a day after a night of sleep deprivation.

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

Chilling out at NYU 12th floor

Day 5 of our stay at NYU Langone, and it has been a quiet visit so far... Toren is hooked up to his EEG and the remote video monitor. As of today he is off one of his medications... he is in reasonably good spirits, but a little bored.... mainly struggling with the inactivity. We have watched a significant number of House and Law and Order episodes. Most days we have played Scrabble - with the outstanding result of Toren beating me once... he seriously enjoyed that and was delighted to know that I hadn't gone easy on him.

We have had a few visitors providing a connection to our real world, and giving us a wonderful break in the rhythm of the days. Newly ordained Rabbi Emma visited yesterday, Cynthia and Gina on Saturday evening and Eve was over on Friday night. We are so lucky and blessed to have the support network that we do.

Toren has a wonderful view of the East River, we watch the barges and medical copters. The nurses have been wonderful skilled and kindly, the doctors have been open and responsive, truly sensitive. I am relieved by the seriousness with which they are all approaching the situation. The plan is to continue to slowly reduce Toren's meds, hopefully to record just a small seizure (something different for Toren). The waiting itself is a skill, after months of praying for no seizure activity we find ourselves hoping reluctantly for a small seizure. Each night as I leave the hospital and kiss Toren goodnight he reminds me of his wishes should the next seizure be fatal. We live in the face of that possibility and equally refuse to be defined by it.

We make plans, talk about a future that we can shape, a future post potential brain surgery, a future that allows Toren to move freely, and without constant angst. It is hard to see beyond this point and yet seeing beyond is sustaining and inspiring. The big challenge is in not shutting down... somehow we manage. Last Night I walked almost all the way back to the Rudin's G-d Bless them for offering up their home as a refuge, a quiet none medical setting with bright morning light. Walking settles me, I watch people from all walks of life allowing the music of an array of languages to wash over me, the rich potency of smells, and colours of clothing. If one has to be on the journey that we are on, then at least we can count the abundance of blessings scattering along our path.

So for now we wait