Josh's Surgery Blog

Update: Switzerland, College, Thalamus

2010-12-26T13:01:00.002-05:00

Here is a long delayed update for those of you who may be tuning in after several months.

College. College did not work out for Josh and it is all but certain that he is going back to high school to finish out his senior year. Too much freedom led to little work, cutting school, and failing classes. He will know his final grades soon, but, at this point, it does not look good.

Thalamus. Josh met with one of the world's leading neuroscientists at NYU in the summer and fall and the result is somewhat promising. The doctor, Rodolfo Llinas, has a groundbreaking theory that something called thalamocortical dysrhythmia is the root cause of some cases of epilepsy and other neurological conditions. Dr. Llinas, who is not a clinical physician but a researcher, gave Josh a MEG and found a focal point for his seizures. If you have been following Josh's case, then you know that is a real breakthrough in itself. Two surgeries, numerous EEGs and MRIs and tests were never able to pinpoint the focal point.

Switzerland. Dr. Llinas and Josh's surgeon at NYU put us in touch with a doctor in Switzerland, Daniel Jeanmonod, who is doing truly amazing, futuristic work that has not been approved in the U.S. In fact, it has not even been approved in Switzerland yet. He is conducting a clinical trial for non-invasive brain surgery to treat neurological conditions, including thalamocortical dysrhythmia. The process uses MRI-guided high intensity focused ultrasound to perform an ablation of the thalamus. We are hoping to visit Dr. Jeanmonod in Switzerland soon, but the procedure may not be available until 2012.

So, lots going on here. Try "Googling" this info, if you want to learn more. I've also put up some links on the right side of this Blog.

Seizures return

2010-09-11T10:50:00.002-04:00

Josh had had five seizures since my last post, including one the day after I wrote my last entry. The Depakote is apparently reducing the frequency and intensity of his seizures, but has not eliminated them completely. We will be adjusting the dosage upwards to try to reach that balance between seizure control and side effects. Josh is really enjoying college. We hope this is the break he needs to turn things around.

17 days and counting

2010-08-22T08:03:00.002-04:00

It has been 17 days since Josh had his last seizure! He tried a "new" medicine, Depakote, at the end of July and it appears to be helping. Josh has never gone this long without a seizure, except for the times when he was in the hospital or just getting home from the hospital.

We are all trying not to get our hopes up too much for fear of getting too disappointed. Epilepsy is a roller coaster, a treacherous and unpredictable ride.

Depakote is one of the oldest Epilepsy drugs and one Josh tried when he was first diagnosed with Epilepsy four years ago. We decided to try it again because it was somewhat effective back then and because he and his seizures have changed in four years.

Josh is starting the fall term at Hudson Valley Community College Aug. 30, under an early admit program that will allow him to finish his senior year of high school by simultaneously getting the high school credits he needs to graduate and college credits. It's a great opportunity and a significant challenge for him.

The Summer

2010-07-31T11:40:00.003-04:00

It's been two months since Josh returned home and, to be honest, it has not been easy for any of us. The emotional roller coaster did not end when he checked out of NYU.

Josh has tried a "new" medicine, Decadron, but it has not had an impact on controlling his seizures and he will be completely off it soon. He has also just started on Depakote, a med he first tried four years ago after being diagnosed with Epilepsy at Albany Med. It's too early to tell if it's having any impact.

Josh had a tonic-clonic (grand mal) seizure one morning this week at 7:35 a.m. It was a shocking and disheartening experience. We thought the Felbatol that he has been taking for 18 months was at least preventing him from having tonic-clonic seizures, but apparently not.

Josh is also starting to see another doctor, although he is more of a neuroscience researcher than a clinical physician. His name is Dr. Rodolfo Llinas and he is a world renowned scientist (Google him, if you're interested). We don't know where it will lead, but Josh has undergone a MEG at his office as the first step.

The seizures return

2010-07-03T07:54:00.002-04:00

Josh's seizures returned this week, four weeks to the day from when he left the hospital. For the record, he went 32 days without a seizure. It was not a surprise and was only slightly disappointing because we were expecting them to return as they did after the 2009 surgery. So now we begin to work on Plan B, which is trying new meds and other possible treatments.

Life after surgery

2010-06-17T07:44:00.002-04:00

It's been almost three weeks since we've been home and Josh is recovering pretty well. He had follow-up appointments in NYC with his neurosurgeon and neurologist this week. His neurosurgeon said Josh is a model patient and has recovered extremely well. He needs to take an MRI in a month or so, but is otherwise clear to resume normal activities.

His neurologist recommended a number of new meds, but wants to hold off until Josh starts having seizures again. Oh, did I mention that Josh hasn't had a seizure in 24 days? We believe it's the lingering effects of the surgery and the steroid he was taking after the final surgery.

Those of you who followed Josh's last surgery in 2009 know we were hoping for "The Miracle Scenario" last time around -- the possibility that the placement of the electrodes on his brain actually had a curative, rather than diagnostic, impact on his seizures. This time around, we are not getting our hopes up because Josh actually resumed having seizures three weeks after the 2009 surgery.

We are starting to think about the next step(s) for Josh. There are a couple of meds, including one that is not approved in the U.S. called Frisium. We will also be looking into transcranial magnetic stimulation, deep brain stimulation, Neuropace, and alternative/natural treatments.

That's the medical update. The surgery, needless to say, took a tremendous emotional toll on Josh and us. We are finding that part even more difficult to deal with than the medical issues.

Thank you

2010-05-31T09:08:00.003-04:00

Josh, Robyn, and I want to thank all of you from the bottom of our hearts for all of your prayers, good wishes, love, and support during our three-week stay at the hospital. This chapter is closed and we now move forward with the next one.

We are grateful that Josh came out of all this in good health after undergoing three brain surgeries in three weeks. He's an amazing kid and deserves so much more than the hand that he has been dealt.

We are grateful for the world class health care and treatment that Josh received at NYU Medical Center. We know that everything possible was done to help him and that he received the best care possible.

We are also so very grateful for the two best employers in the world, BNA and Empire State College, who allowed us to take three weeks of paid leave to be with Josh during his hospital stay.

(On a personal note, I am so grateful to have Robyn -- my love, my best friend, and my life partner -- by my side during this journey, with her grace, strength, wisdom and love.)

We want to thank all of you who visited us in the hospital, particularly those who traveled down from upstate, those who came more than once, and all the uncles, aunts, and cousins. It was particularly nice for Josh to have visits from his cousins. Thanks to Grandma Sandy who traveled all the way from Florida.

Robyn and I are especially grateful to reconnect with several old friends during this visit -- Randy, Annette, Maddy, Jeff and Melissa. Make new friends, but keep the old!

Finally, thanks to all of you who commented on this blog. Your support sustained us and inspired us through our journey. I will continue to update the blog from time to time, so please check back and continue to leave your comments. We will never forget, and will always be grateful for, the blue blanket of love that you provided for us.

Yeah!

2010-05-30T21:47:00.002-04:00

We arrived home tonight at about 7:30 p.m. I will continue to update the blog from time to time, but not on a daily basis.

Homeward bound

2010-05-30T09:54:00.002-04:00

We're going home today or tomorrow. Josh's MRI was good and the culture taken from his brain showed no signs of infection. Dr. Weiner wants to wait for the latest results of the culture before approving Josh's discharge.

Josh has been pretty irritabale the past couple of days. It's hard to know how much of that is adolescence, medicines, Epilpesy, or just the stress of what he has been through. In any case, he has had it here.

Saying good bye to the PICU

2010-05-29T09:52:00.003-04:00

Josh is expected to be moved off the PICU today and into a regular room in pediatrics. After that, the next step is home!

Josh looks really good today and is very much looking forward to leaving this place. He has made friends with most of the nurses in the PICU, so it will be bittersweet for him to move. While I'm not objective, I think I can safely say that he has been very well liked by the nurses, too. The three of us are so grateful for the kindness and care that he received from the PICU nurses.

Robyn and I are feeling a mix of sadness and relief today. Sad that we did not get the desired outcome and sad to end this chapter in Josh's long journey. It has been -- and will continue to be -- a grieving process for us, as we deal with the loss of this once promising "cure."

It is a relief to know that we will be going home soon. We have gotten off the roller coaster and that feels good. It has been so spiritually and emotionally draining to hope and pray every day for seizures, for localized seizures, and for Josh to come through the surgeries in good health. Today, I only wished for Josh to continue to recover speedily and and in good health.

Recovery

2010-05-28T20:03:00.004-04:00

Josh has been sleeping for most of the day, but appears to be recovering well. He got up and out of bed at about 3 p.m., only a few hours after surgery. He has been out of bed three or four times and ate something light at about 6 p.m. He got morphine twice for the pain and Percoset once. At its worst, the pain has been a 9 on a scale of 1 to 10, he said.

We are counting down the days here in the big city of New York and our little city, a.k.a. the NYU Medical Center. We have spent most of the month of May here, getting to know the nurses and staff, making friends with fellow patients and families, and establishing routines for our long days.

The outside world is celebrating Memorial Day weekend, but the thought of barbecues and beaches and leisure is so distant to me. We are all very much looking forward to going home and the simple pleasures of sleeping in our beds and showering in our own bathroom and eating a home cooked meal in our own kitchen. At the same time, we will be facing many challenges -- both old and new -- and the thought of some of these challenges gives me a pit in my stomach.

So what is the next step for Josh and his Epilepsy? I think we all need to go home and process all that we have just been through before we make any decisions. We will look at all of our options and move forward from there. We have promised Josh that we will never give up looking for a cure or treatment for his seizures. And I will never stop praying for Josh to be seizure-free, in good health, and driving a car.

Surgery went well!

2010-05-28T11:28:00.001-04:00

The surgeon, Dr. Weiner, just came into the waiting room to tell us the surgery is over and went well. Josh will be back in the PICU today and tonight and then perhaps on the regular pediatrics floor tomorrow. We're hoping for discharge Monday.

Life

2010-05-28T08:45:00.002-04:00

You never know what life has in store for you.

Josh went into the O.R. this morning at 7:30. Robyn and I hugged him, told him we love him, and watched him get rolled away on a bed through the doors to the O.R. It was the fifth time in less than a year that we went through this, if you count all the brain surgeries to open and close him.

I never could have imagined that my child would have to endure five brain surgeries in his lifetime. I never could have imagined that Robyn and I would have to watch him get rolled away five times.

You never know what life has in store for you. If you have children, hug them, tell them you love them, and then count your blessings.

Praying for a miracle

2010-05-27T18:12:00.002-04:00

Josh is scheduled for the O.R. tomorrow morning at 7:30ish a.m. We will be praying for a seizure -- a localized seizure in the right frontal region, please -- between now and tomorrow morning. Either way, bring out the blue blanket again. Josh will be in surgery tomorrow for the morning and part of the afternoon. Thanks for all of your love, support, and prayers.

The last day

2010-05-27T13:25:00.001-04:00

The plan is for Josh to have the electrodes removed in a surgery scheduled for sometime tomorrow morning. There will be no resection, unless he has a seizure before then and it is localized.

Disappointing news

2010-05-26T11:19:00.001-04:00

We received some more disappointing news this morning. Josh actually had one of his typical seizures last night at around 10:30 p.m. We all went to sleep with new hope and awoke with great anticipation of the doctor's words. Unfortunately, Dr. Carlson, the EEG expert, said the focal point of the seizure was diffuse, not localized, and the information from the seizure does not lead itself to resection.

Communication breakdown

2010-05-25T21:29:00.002-04:00

The roller coaster continues.

Dr. Weiner told us tonight that the team of docs reviewing Josh's case concluded that there was not enough benefit to doing the resection, based on the information that is currently available. We thought that "the case" was already made for a resection, based on the one seizure last week, last year's seizure data, and inter-ictal info. But actually "the case" was only a proposed case that was presented to the team, which includes the top docs at the Epilepsy Center.

So it looks like Josh will have surgery Friday, either to remove the electrodes and nothing else or to do a resection.

We are all pretty shell-shocked from the news. Josh is very disappointed. We are trying to remain positive, in the face of some very difficult news. We are hoping desperately for more seizures between now and Friday.

Day 16

2010-05-25T09:15:00.003-04:00

Today is Day 16 in the PICU. No new seizures, but we're hoping for at least one more before the surgery. Josh was sleep deprived again last night and has undergone photic stimulation (flashing lights) several times. The team of docs is meeting this afternoon at around 3:30 p.m., so we may know more later today or tonight.

We continue to be blessed by the support we have received from friends and family. The rabbis paid us a visit last night, after a long day of travel for them. We are so fortunate to have their friendship, support, and spiritual guidance. Robyn and I say a misha berach (a Hebrew prayer for healing) for Josh (and others)every morning and every night, but it somehow feels more official when Rabbi Linda and Rabbi Jonathan make the prayer in person by Josh's bedside!

A word from our sponsor

2010-05-24T16:00:00.003-04:00

And now a word from our sponsor. Robyn and I moved from the apartment right next door to the hospital into a nearby hotel room last night. Both the apartment and the hotel room are being provided to us free of charge by an organization called FACES (Finding a Cure For Epilepsy and Seizures).

Robyn and I can't say enough good things about FACES and the programs that they provide, especially the apartment for out-of-town families. It has not only saved us a bundle, but has provided us with priceless peace of mind by being in close proximity to the hospital. We can leave the hospital late and be back early in the morning. We can go back in the middle of the day for a nap, if we wish.

There are many worthwhile charities out there, but if you are inclined to make a charitable donation in Josh's honor, this is the place. (The link to FACES is on the right column)

I now return you to your regularly scheduled blog.

Light at the end of the tunnel

2010-05-24T10:37:00.002-04:00

After finishing our second weekend in the PICU and two weeks after the first surgery, we are starting to see light at the end of the tunnel. The team of doctors are putting together a case based on Josh's one seizure, information from his sub-clinical seizures in July 2009, and inter-ictal (between seizures) activity on the EEG.

Based on this data, it looks like they probably will do a resection of part of Josh's right frontal lobe. The surgery would be Wednesday or Friday of this week. The essence of the decision is that removing part of the right frontal lobe will reduce his seizures, but not completely eliminate them. It is not a home run or a slam dunk, but perhaps a ground rule double or a couple of free throws.

It's nice to know that Josh has not gone through all of this for naught, that they can help him in some way, even if they can't find and resect the entire focal point of his seizures.

There are still a number of questions and issues to work out, but this is the latest news as of this morning.

Thank you

2010-05-23T15:03:00.003-04:00

We had a waiting room full of visitors yesterday, including three families and Stephanie who traveled down from upstate. It was especially nice for Josh to receive visits from his friends -- Matt, Jemma, Leah, and Luc. Josh, Robyn and I are so grateful for the love and support we have received from our friends and family. You should know that it helps to sustain us during these very challenging times.

We are also so grateful for the generous gift that was delivered by Amy from our Temple Sinai community of friends. We are truly blessed to be a part of this community and this synagogue.

We are finishing our second week today and it is getting harder and harder to keep our spirits up. Josh has had it; he wants to go home badly. Robyn and I are trying not to get discouraged, as we wait...and wait...and wait some more. Josh has not had any more seizures since Thursday night.

no seizures, no news

2010-05-22T09:18:00.001-04:00

There have been no seizures since the big one Thursday night so the wait resumes. Lots of visitors are expected today so maybe the excitement will stimulate something.

good news,bad news

2010-05-21T10:08:00.003-04:00

The good news is Josh had a full-blown seizure in the middle of the night, at about 1 a.m. It started out as a partial seizure and then expanded to a generalized tonic-clonic seizure (aka grand mal). He has had only three tonic-clonic seizures in his life and none since he began taking Felbatol in January 2009. It is likely that the build-up of not having a seizure for 11 days caused the partial seizure to "generalize," something the docs call a secondary generalized tonic-clonic seizure.

The bad news is there was no distinct focal point for the seizure. Dr. Carlson, who is the EEG expert, said it began for a fraction of a second on the right side, but then spread to a large part on both the left and right sides.

We are hoping now for more seizures, which will yield more information. But the decisions and issues from here become very complicated. It's not just about having a seizure or not.

If the data does not change, the choice would be to "do no harm," remove the electrodes, and not do a resection; or remove parts of the right brain with the possibility of reducing only a portion -- less than 50 percent -- of Josh's seizures.

We have a lot to think about and mull over today and for the next few days.

Still waiting

2010-05-20T09:51:00.002-04:00

The seizure Josh had on Tuesday was too brief to yield any information on the EEG. It may, however, be useful for comparison purposes at a later date, when Josh has a full-blown seizure. To regroup: its been 10 days off anti-seizure meds, two nights of sleep deprivation, and several photic stimulation events (flashing lights), but no measurable seizures. The only other time Josh has gone this long without a seizure was last July after his first surgery.

Josh is getting frustrated and bored. The rec therapist has Josh doing all sorts of arts and crafts projects and we're trying to keep him entertained, but it ain't easy. We're hoping to find him a Super Mario video game, which normally provokes seizures.

I think we have all hit some kind of a wall. Ten days is probably the limit to how long we can stand being here without losing our minds and going stir crazy.

Yessss!

2010-05-19T10:17:00.002-04:00

Confirmed! Josh had a seizure yesterday afternoon, albeit a very small one. It was in the right frontal region, which is good. He's on his way. This is really good news and we're hopeful he will continue to have seizures now that he has "broken the ice." The docs would like to see at least three seizures to get enough data to proceed to a resection.

Josh's spirits are pretty good, although he gets bored easily. I call him the mayor of the PICU because he loves to schmooze the nurses, residents, doctors, and parents of fellow patients. Another 17-year-old came into the PICU last night after a similar operation and I know Josh is just itching for him to wake up from surgery so he can make friends.

Robyn, Josh and I enjoyed a full home-cooked meal last night, thanks to Eve. She brought us delicious pot roast, carrots, and spaetzle, followed by homemade strawberry shortcake. We love the takeout options here in Gotham, but there's nothing like a home-cooked meal to bring warmth and love to our hospital stay. Thank you, Eve!

show time?

2010-05-18T18:25:00.003-04:00

We think Josh had a seizure this afternoon, but it has not been confirmed yet by the neurologist reading the EEG. We will know tomorrow morning. Yeah! Here is the best case scenario that we are hoping and praying for: seizures from now until Monday; resection/surgery on Monday; discharge on Thursday; we live happily ever after from Friday forward.

Seizures, please

2010-05-18T11:18:00.002-04:00

Josh was intentionally sleep deprived last night to try and lower his seizure threshold. We're paying the price today with his grumpiness, as expected. They have tried photic stimulation (flashing lights)several times, but it did not cause any seizures. Josh has been off his seizure meds now for eight days. Seizures, please!

Simulating reality

2010-05-17T21:53:00.002-04:00

Josh's day was as close to reality as possible today, with one exception -- no seizures. He had a tutor come in and help him do some school work. He had physical therapy to help him move around. He was even allowed to untether himself from the EEG and walk down the hall. He had two rec therapist come in with projects to keep him busy. But still no seizures.

I did a mitzvah today. The hospital rabbi (who we've seen a number of times during our stay) saw me in the hallway and asked me to make a minyan so that a group of orthodox men could say their daily prayers. As it turns out, Josh's surgeon was among the minyan and we both agreed that it was good sign.

Marking time

2010-05-17T08:46:00.002-04:00

Today is the beginning of our second week. Time passes slowly here and each day moves into the next in a blur. Robyn did a laundry yesterday because we've run out of clean clothes and today we need to buy a new bar of soap because we are running out. These are my mundane markings of time, with every day and night spent in the PICU.

Still no seizures, but Josh is in good spirits. He's been laughing at my jokes lately, which is a big change from the past few months, when he thought I was just plain annoying. We are hoping he will crack open his books and perhaps try to do some school work today. Maybe the stress of school will provoke a seizure! We are also hoping to have the recreational therapist come in today and get Josh involved in some kind of activity.

Surprise visitors

2010-05-16T07:19:00.002-04:00

It's early Sunday morning and I'm sitting by Josh's bedside. He is sleeping peacefully, his head wrapped in gauze, dozens of wires sprouting from his head, and a half-dozen wires and tubes attached to his chest and arms.

Josh's medical status has remained the same, which is good news. The only change we would welcome is a seizure or two or three.

He got a very special surprise visit last night from Jay and Nicole, the parents of his PICU roommate last year. They came down from Poughkeepsie to see him! Josh has been in touch with them, but we didn't expect the visit last night at all.

Last year, Jay and Nicole were part of the "Party in the PICU." There were three families with the same doctors, all had children recovering from Epilepsy surgery. The bedside curtains were almost always open. We shared meals together, we shared heartache together. This year, Josh has the entire four-bed PICU "pod" to himself.

Robyn and I also got a blast-from-the-past visit from our high school friend, Randy, who broke through his dislike of hospitals to come and visit. His wife, Annette, a college friend of ours, has already been by three times!

I can't express how much it means to the three of us to have all of your love and support. Every day we find new evidence of the love that surrounds us.

Another good day

2010-05-15T16:19:00.002-04:00

Josh is having another good day and is getting better every hour. He ate almost a whole cheeseburger! He had physical therapy today to get him up and around, although he is tethered to the EEG wires. They also tried flashing lights today for the first time to provoke seizures, but nothing yet. I'm really thrilled to have no crisis to report. It's a waiting game now, waiting for seizures.

A very good day

2010-05-14T20:44:00.004-04:00

Josh had his best day yet today! He has been awake for most of the day and ate his first food. He checked the backlog of text and phone messages on his cell phone and read ALL of your messages on the Blog. We are all so grateful for your prayers and positive thoughts and support. Blue blanket - 2; Epilepsy - 0.

Josh's CT-scan this morning was perfect and Dr. Weiner is very confident that the slurring and asymmetry will go away. Indeed, it mostly has already. Josh, believe it or not, is taking Tylenol for pain. Dr. Weiner does not want him too dopey and tired from narcotics.

Dr. LaJoie has already called two times, even though she is on her maternity leave. We are so grateful for the quality of medical care by the doctors, but also grateful for their personal integrity, kindness, and humanity.

We made Shabbat tonight with Martina and Toren in Toren's room and then with Martina and Josh in Josh's room. (They are friends from Temple Sinai. Toren also has Epilepsy and is undergoing a long-term EEG in another part of NYU). It was very special to share Shabbat so far from home -- in this sometimes cold place --with familiar faces. We brought the light and warmth of Shabbat into our lives and looked forward to our families sharing a seizure-free Shabbat together in the future.

on the mend

2010-05-14T07:51:00.003-04:00

Josh was looking so much better last night after the "emergency surgery." He was up for more than an hour and talking. His slurred speech was better, but not totally gone, and his facial asymmetry was much improved.

His overnight was fairly uneventful. He was put on dilaudid as an IV pain reliever, but we think it is making him really sleepy this morning. He just had another CT-Scan to see how things are going and we will know the results in about an hour.

The setback

2010-05-13T17:13:00.002-04:00

Josh came out of surgery at 5 p.m. and Dr. Weiner said the operation went well. He did find blood under the dura that surrounds the brain, but it was not active bleeding and he was able to clean it up and relieve some of the pressure on Josh's brain. Dr. Weiner said he hopes this will alleviate Josh's slurring, asymmetry, and discomfort.

We're very grateful that we found this early and it was taken care of. Dr. Weiner said he does not recall this problem ever occurring before. I said Josh is a unique kid!

Josh has had a tough time in his first 17 years of life. The way I figure, he's due for age 18 through 100 to be a charmed life.

Back in O.R.

2010-05-13T14:48:00.002-04:00

Josh is back in the operating room. He had a CT-Scan this morning and it found that there was some bleeding between his scalp and his skull. Dr. Weiner felt it was best to go back in and "clean things up." He said it was very unlikely that the bleeding was on the brain itself. Dr. Weiner thinks Josh's symptoms -- slurring speech and facial asymmetry, in particular -- are due to the bleeding. (Facial asymmetry is the clinical term for Josh's smile being out of whack, one side up and one side down. Kind of like having Novocaine from the dentist.)

Dr. Weiner says perhaps Josh's high blood pressure caused something to burst. He said it was a chicken and the egg type of thing. Perhaps the bleeding caused the high blood pressure.

The surgery is expected to take about one hour and we will know more at about 4 pm. ish. Bring out the blue blanket again!

Replacements arrive

2010-05-13T06:45:00.003-04:00

Rebecca and Kevin arrived from Portland, Me. last night at about 8:30 p.m. It's great to see them and have the family whole again. I think Josh will really benefit from not having to be with me and Robyn 24/7, but to have Rebecca and Kevin at his bedside.

Yesterday was not a great day for Josh, although he made progress. His blood pressure was fairly high on and off all day and he complained of a headache on and off all day. At one point, he said the pain was "a freakin 11" on a scale of 1 to 10. It's hard for any of us to imagine what the headache from a craniotomy feels like, but it must be bad.

He also had the chills a couple of times, which brought back some scary memories of the rigors that occured after the last surgery. And his speech has been slurred at times.

The good news is that he was up and out of bed for a little while at about 6 p.m. and was awake for most of Rebecca's and Kevin's visit.

Still sleeping

2010-05-12T15:53:00.002-04:00

It's hard getting Josh up under normal circumstances. This is a boy who likes to sleep. Well, here we are, two days after surgery, and he still won't get up for more than a few minutes. He has still not eaten anything. We and the nurses will keep trying. Medically, everything appears to be fine. His MRI was normal and Dr. Weiner said everything looks good.

Day 2

2010-05-12T09:32:00.003-04:00

We haven't seen the docs yet, but Josh had an uneventful night, which is good. Robyn and I had a second good night's sleep and that's good, too. Today, we hope and expect Josh to be awake, drinking, and perhaps eating light.

Day 1

2010-05-11T19:23:00.001-04:00

Josh had a bit of a rough day, but he is mostly doing okay. He had an MRI this afternoon, which showed that everything is fine. He was vomiting this morning and his blood pressure was a bit high, but he is resting peacefully for the most part. He still has not had anything to eat or drink and has not been awake for more than a few minutes at a time. We are hopeful that tomorrow he will turn the corner and start to eat, drink and wake up.

Back in the PICU

2010-05-11T08:40:00.002-04:00

Back in the PICU. Josh got what I like to call "the corner suite" in the PICU. It was the bed he requested because it has its own mini-bathroom/toilet. Everything is going well. Josh had a peaceful night and is on a morphine pump for his pain. The doctors read his EEG and he has not had any seizures yet. Dr. Weiner has been in twice and said Josh is doing well.

They will be cutting Josh's anti-seizure med, Felbatol, in half today and then eliminating it tomorrow, in an attempt to cause seizure activity. Just in case you forgot, the point now is to get seizure activity, so the docs can find the focal point of the seizures in the brain.

While things move very slowly at NYU sometimes, Robyn and I are very confident that Josh is getting the world's best medical care. Just to prove the point, Dr. Devinsky was in this morning to take a look at Josh's case. He is the head of the NYU Epilepsy Center and one of the world's leading authorities on Epilepsy. He is the Derek Jeter of epileptologists...or maybe the Babe Ruth (gotta get my baseball analogy in).

Robyn and I had a very good night's sleep in the apartment last night and we are feeling rested, hopeful, sometimes fearful, and ready for the long haul.

All done!

2010-05-10T19:59:00.002-04:00

Dr. Weiner came out at around 7:45 p.m. to say everything went well! It took a long time, but it went well. We are off to the PICU to see Josh, who will probably be sleeping for a long time. Thanks for the prayers! Blue blanket - 1, Epilepsy - O at the end of the first inning!

More waiting

2010-05-10T18:40:00.002-04:00

The anesthesiologist came out at 4 p.m. to let us know they finished the right side of Josh's brain and everything went well. That means they were half-way through. We are still in the waiting room, expecting Josh to be out of surgery around 8 p.m.

The Wait

2010-05-10T12:01:00.003-04:00

Josh arrived at the hospital at 6 a.m., but did not actually go into the operating room until 11 a.m. It was a morning of waiting and now comes the Big Wait for me and Robyn. Josh had an MRI at around 8 a.m. and then had a PIC line (which stands for something intravenous something) put in. It's like an IV only more permanent. He should be out of surgery at 6 ish. I'll keep you posted.

A Blue Blanket of Love

2010-05-08T09:20:00.000-04:00

Josh, at our urging, has reluctantly agreed to participate in a program at the NYU Medical Center called the Mind-Body Education and Patient Care Program. The program is based on the book Prepare For Surgery, Heal Faster by Peggy Huddleston. The ideas and techniques in the program are New Age meets Mainstream Medicine: guided imagery, relaxation, positive healing statements, stress management.

There are five main steps in the program and here is the third one: Ask your friends and loved ones to picture you enfolded in a blanket of love and/or in a calm, relaxed state during the hours of your surgery.

Well, Josh’s “Blanket of Love” is navy blue, he said, and he will be going into surgery Monday morning at around 8 a.m. or 9 a.m. He will be in surgery for 6-8 hours. Please wrap him in a blue blanket of love, prayer, peace, calm, and healing. There are so many people hoping and praying for Josh that I know he will feel your love.

Getting Ready

2010-04-30T19:05:00.002-04:00

We're making final plans for our trip to NYU. Josh had four pre-surgical doctor appointments this week and everything checked out okay for the surgery. He will be followed by a new neurologist, Dr. Nadkarni, for the next few months because his regular neurologist, Dr. LaJoie, is on maternity leave. We all met him and liked him very much. Please keep Josh in your prayers.

Warning: The Images Are Graphic

2010-03-30T07:54:00.005-04:00

There was an excellent segment on the show "The Doctors" that explains the surgery that Josh will be going through in May. While the show was about Tuberous Sclerosis, a type of Epilepsy which Josh does NOT have, most of the procedures on the show are identical to what Josh will be undergoing.

In particular, the show gives a good representation of the strips and grid that will be placed on the surface of Josh's brain. The surgeon featured on the show, Dr. Weiner, is Josh's surgeon, and the hospital and waiting room are at NYU, where Josh will be having the surgery.

The link for the show is on the right side of this blog.

Neurosurgery 101

2010-03-23T20:56:00.002-04:00

Here's what's going to happen in the phase 2 surgery in May, in a nutshell. Josh will have strips (about 1/8 x 1 1/2) placed on the surface of the left side of his brain and a grid (about 2x3) on the surface of the right side. The strips and grid will be attached to an EEG, which will monitor the electrical activity in his brain. He will then be observed for several days. The hope is that they can observe Josh having seizures and then pinpoint the focal point from which the seizures originate. The grid is like a map.

If they can locate the focal point and it is does not involve what they call an "eloquent" part of the brain -- a part that Josh needs for normal functions like speech -- then Josh would have a second surgery right away. In that surgery, they would do a resection to remove a portion of his brain. The whole hospital stay would be about 3 weeks.

Yes, there are lots of "ifs," but the prognosis is very promising if they can find where the seizures are located and do the resection. We are all hoping and praying that that is the case.

May 10 surgery date

2010-03-12T15:14:00.001-05:00

We just got word that Josh is scheduled for phase 2 brain surgery on May 10. I will update you along the way, as we continue our journey.

The ravages of Epilepsy

2010-02-03T13:57:00.004-05:00

Josh had his fifth IVIG treatment last week. Dr. Rubinstein said he would like us to wait four more months before deciding if the treatment is working or not. So far, it is not helping one bit. We will have some test results in a week or so that may shed some light on whether the IVIGs are having a positive affect on Josh's immune system.

Josh will be 17 in a couple of days. It has been four years since he was first diagnosed with Epilepsy. It would not be an overstatement to say Epilepsy has ravaged his life -- and ours. The past couple of months have been a disaster for him and us, in terms of his and our emotional well-being.

Josh is currently being home-schooled, as a result of his seizures and numerous problems in and with school. Our lives have been turned upside down.

Gammaglobulin II

2009-12-18T16:23:00.002-05:00

Josh had his second gammaglobulin infusion yesterday in NYC and it went very well. He had no ill side effects and appears able to tolerate it okay. The plan now is for him to have an infusion at home every two weeks. A visiting nurse will come and do the work. It will be 2-3 months before we know if the treatments are helping his Epilepsy or not. Happy Holidays to all!

A night in the ER

2009-12-04T19:00:00.002-05:00

There's nothing like a stay in the emergency room to clear your mind and put your life in perspective. We are very grateful that Josh is home and well. He was discharged from the hospital this morning and is not experiencing any more side effects from the IVIG treatment.

Last night was quite an ordeal. We were told by the ER doctor that Josh needed to stay and be monitored, in case he was going to have heart failure. They took an EKG, some blood work, and a chest X-Ray and found nothing wrong.

Dr. Rubinstein would like Josh to have the next treatment in his office, instead of at home as originally planned, so that Josh can be observed. He said the side effects Josh was experiencing are very rare. (I say Josh continues to confound the best medical minds in the world.)

We have had a long and stressful few days and are trying to chill this weekend and get back to normal, whatever that is.

Overnight in the ER

2009-12-04T07:11:00.002-05:00

Josh had his first IVIG treatment in NYC yesterday with Dr. Rubinstein. When we got home, he started feeling tightness in his chest and shortness of breath. We could not reach Dr. Rubinstein, so we brought him to the ER, where they wanted to keep him overnight for observation. As of 7 a.m. this morning, he is okay, and we expect him to be discharged later this morning. More details later.

New treatment, new hope

2009-11-24T19:53:00.002-05:00

It's now official -- the Dec. 24 surgery has been canceled. Josh will begin intravenous gammaglobulin (IVIG) treatment Dec. 3 with Dr. Arye Rubinstein, the director of pediatric allergy and immunology at the Albert Einstein College of Medicine in the Bronx. The first treatment will be done outpatient at Dr. Rubinstein's office and subsequent treatments will be done at home with a visiting nurse.

It will take two to three months before we know if the treatment is effective in treating Josh's seizures. If it is not, we will re-schedule the surgery for the Spring. Keep Josh in your prayers and keep your fingers crossed with us.

A change of plans

2009-11-15T15:35:00.002-05:00

It looks like Josh will NOT be having surgery Dec. 24 after all. In all likelihood, he will be trying a new treatment (more on this in a later post) that will take 2-3 months to determine its efficacy. The treatment, called IVIG, will involve blood infusions of gamma globulins.

At this point, I sure wish I paid more attention in Science and Biology class!

Phase 2:Christmas in New York

2009-10-03T14:23:00.003-04:00

Neither Vimpat nor prednisone controlled Josh's seizures. He is back to having one or two per day.

Josh is now scheduled to undergo phase 2 surgery on Christmas Eve day, Dec. 24, at NYU. If all goes as planned, he will have a "grid" placed on the right side of his brain and "strips" on the left side. He will then be observed for seizure activity. When/if they see enough activity, they will proceed to a resection of his brain, assuming that they can locate and remove the part(s) of his brain where the seizures are originating from.

He also has an appointment with a neuroimmunologist later this month. The purpose of this visit is to possibly shed some light on why the steroid Josh took after surgery was successful in controlling his seizures.

Prednisone and Vimpat

2009-09-12T19:40:00.002-04:00

Josh has been on prednisone for about three weeks and it has not helped control his seizures, which are occurring about 3 times per week. He will be gradually taken off prednisone and will start a newly approved drug called Vimpat. We are also considering proceeding to phase two surgery.

On another note, Josh started school on Wednesday and appears to be doing well with the new routine and his teachers. So far, so good.

Seizures return

2009-08-24T10:07:00.002-04:00

After 51 days, the seizures have returned. Josh has had four complex partial seizures in the past four days, similar to the ones he was having before surgery. It is clear that the return of his seizures corresponded with the elimination of steroids from his system -- about four weeks after his last dose. There is, therefore, a very strong probability that steroids can/will control his seizures. Dr. LaJoie is away for a week, but she has indicated that the first Rx Josh will try is prednisone. We will be trying to get an Rx ASAP.

On another front, the team of docs met and determined that Josh can proceed to phase 2 surgery, if his seizures return. In this surgery, he would have a "grid" placed directly on the right side of the brain (where the seizures are believed to originate) and "strips" (again) on the left side.

We have many, many questions and many more miles left on this journey, also known as an emotional roller-coaster. I will try and update the blog, as the aswers come in.

recuperating and recovery

2009-08-05T11:33:00.002-04:00

Josh had four stitches removed yesterday and had follow-up visits with his neurologist and neurosurgeon. His neurosurgeon said everything looks great. Josh has been doing extremely well at home, recuperating and recovering nicely, hanging out with his girlfriend and friends. And still no seizures!

The next milestone is the team meeting to evaluate Josh's strip study (phase 1 surgery), which will be held in two weeks. The team can recommend that Josh not proceed to phase 2; proceed to phase two with a grid study on the right side; or proceed to phase 2 with a grid on the right and strips on the left.

All of this could be moot if he continues not to have seizures. If he continues to be seizure-free, the most likely medical explanation is that the electrodes had an unanticipated impact on his brain. If he does have a seizure in the coming weeks, the most likely medical explanation is that the steroids he was given to reduce swelling in his brain also eliminated his seizures. If that is the case, Josh will probably be put on prednisone as an anti-seizure med.

Home sweet home II

2009-07-25T09:06:00.001-04:00

All is well! FYI, I have posted a new timeline and thank yous to the right of this post.

Home sweet home

2009-07-23T20:24:00.002-04:00

We got home at about 5 p.m. and all is well! Josh has two large incisions/scars on his head, but they don't bother him. He is feeling well and happy to be home.

We came home to meals from Jill, Katherine, and Lollie and a refrigerator with juice and milk from Lollie. Robyn and I are so touched by your kindness. (As the cook in the house, I especially appreciate the home cooked meals!) We have been overwhelmed by everyone's support.

One of the simple pleasures of being home was being able to sit down together at a table with plates and utensils and glasses and have a meal. We have been eating take-out food on paper plates on our laps in a hospital room for three weeks.

Yahoo!!

2009-07-23T11:38:00.001-04:00

On our way at about noon or 1:00ish and home for dinner!!

Goodbye NYC!

2009-07-22T16:53:00.003-04:00

All indications are that we will be leaving for home on Thursday! I will probably not have time to blog tomorrow, but you know what I would say -- yahoo! I will update this blog from time to time when we get home, so you will know how the next steps in our journey turn out.

With love, gratitude, and appreciation beyond words,
Jerry and Robyn.

The best employers

2009-07-22T09:58:00.002-04:00

Robyn and I are so grateful to our employers, BNA and Empire State College, for giving us the time off we needed to take care of Josh and for being so flexible and supportive. I can't imagine going through this without the support of our employers and without the great health benefits provided by BNA.

Tomorrow

2009-07-22T09:54:00.002-04:00

We are waiting to hear from Dr. Weiner, Josh's surgeon, about whether we can go home tomorrow. It looks like it will be tomorrow or Friday. Josh is doing well after spending his first night in a regular hospital room.

Light at the end of the tunnel

2009-07-21T11:59:00.002-04:00

We're seeing light at the end of the tunnel. Josh was moved out of the PICU this morning and is now in R. 947 on the pediatric floor (212-263-1947). He had a CT-Scan this morning to make sure everything is okay. He is gaining more freedom and more strength every hour and we are enjoying getting our old moody teenager back! We are hoping to come home Thursday. Yeah!!!

Freedom

2009-07-20T18:25:00.002-04:00

Josh got out of bed and went for a walk up and down the hall! It was great to see him upright again! He also punched me in the arm twice when he didn't like my jokes. It really felt good to be punched again!

count your blessings

2009-07-20T13:58:00.002-04:00

There are many, many sad stories here in the pediatric ICU. It is filled with everyday people who are facing extraordinary challenges in their lives.

We have made friends with a couple whose two-year-old son has brain cancer and another whose two-year-old has epilepsy and underwent a similar surgery to Josh. We made friends with another family whose five-year old has tuberous sclerosis and another whose son is severely disfigured and required extensive plastic surgery on his face.

I don't want to get all preachy, but, if you have children, give them a hug, tell them you love them, and then thank God for your blessings.

All good!

2009-07-20T12:02:00.001-04:00

It's all good. Josh got out of surgery at about 10:45. Dr. Weiner said it all went well and was uneventful. Josh got some morphine and he is now resting comfortably.

Surgery II

2009-07-20T08:30:00.002-04:00

Josh went into surgery at 8 a.m. and should be out at about 11 a.m. The actual surgery is about 1 1/2 hours.

Counting down

2009-07-19T11:48:00.001-04:00

Counting down until tomorrow and putting our faith in the miracle scenario.

pizza party

2009-07-18T11:20:00.002-04:00

Josh had his head wrap changed last night and the drainage tubes removed from his head. He's had a headache, as a result, and they have been giving him percoset. He told me this morning that he realizes, being in the PICU, that there are many kids in worse shape than him.

We had a pizza "party" in our PICU yesterday with the two other families in our PICU "pod" (there are three four-bed pods on the PICU floor). We have all gotten very friendly over the past week, and Josh has particularly enjoyed their company. Sadly, Josh's two roommates, two-year-old Ryan and five-year-old Bella, have not experienced the desired results from their strip studies.

Counting down the days

2009-07-17T10:55:00.004-04:00

Still no news to report -- just waiting and counting down the days. Josh has a headache for the past several hours, which may be due to the fact that he has been off steroids (used to reduce swelling in his head) for a couple of days.

A long haul 2

2009-07-16T13:26:00.001-04:00

Nothing new today -- still waiting. I'll keep you posted.

A long haul

2009-07-15T15:37:00.002-04:00

It looks like Josh/we will be staying longer than we expected. Josh has agreed to stick it out through this coming weekend, in hopes of having a seizure. That means the surgery to remove the electrodes will be Monday and we will need to stay in the city until sometime at the end of next week. Ugh!

Day 14

2009-07-15T10:46:00.002-04:00

Today is the end of the second week. The latest question/decision is, without a seizure, should Josh have the electrodes removed Friday or Monday. We are all ready to go home, but want to make sure we have done all we could do.

The Miracle Scenario

2009-07-14T08:49:00.002-04:00

Some of you have heard us speak of the "Miracle Scenario," but up until this point I have been reluctant to blog it. But, considering that today is Josh's 8th day off all anti-seizure meds and his 16th day without a seizure, it is hard not to believe in the possibility of a miracle.

The "miracle scenario" is this: The placement of the electrodes on Josh's brain was enough to alter something and "cure" him of seizures. His doctors say there have been rare cases in which this has occurred. Perhaps Josh will be one of those and they can write him up in the medical books -- The Josh Silverman Syndrome. One of the surgeon's associates used the metaphor of pressing control-alt-delete and re-booting the brain.

So, bottom line, we're praying for a miracle, but, if he has a seizure, that's good, too.

A misha berach

2009-07-14T08:40:00.002-04:00

Josh received a special bedside misha berach (the Hebrew prayer for healing) yesterday from Rabbi Linda and Rabbi Jonathan, who drove down from Saratoga to visit. How blessed and fortunate we are to belong to a synagogue where the rabbis will drive 200 miles to make a hospital call! Their friendship, wisdom, and spiritual guidance has meant so much to us.

New digs

2009-07-13T09:52:00.002-04:00

Hard to believe, but we're finishing our second week here. Josh is just amazing. He is doing very well and handling all of this like a real trooper. After the initial disappointment of not having the electrodes removed last Thursday, he has taken the next delay in stride.

Josh has made friends with his two-year-old roommate's parents, particularly his dad. This has given Josh someone to schmooze with 24/7 and, as you know, Josh is quite the schmoozer. His roommate, Ryan, shares the same surgeon and neurologist as Josh, and has undergone a similar surgery. They both have their heads wrapped in white gauze. I say they share the same hair dresser.

Robyn and I are doing well. We're doing all the things you might expect when you move into a new place -- finding the best pizza and Chinese food, locating the laundry, and making friends with neighbors.

Josh Speaks

2009-07-13T09:50:00.001-04:00

Hey everybody, just wanted to say hello and let you all know how I've been doing so far in the hospital. I'm finally almost done in the hospital. Only about another week. I cant wait to be able to to walk out the front door with no wires attached.

I really appreciate all the support from everyone. Hope to see you soon.

new timeline

2009-07-12T08:44:00.002-04:00

We have a new timeline now, depending on whether or not Josh has a seizure today. If he does not, he will not have the electrodes removed until Thursday. He would then need to stay in the hospital for a few days and a few more in the NYC area. Dr. Weiner would not want to leave the electrodes in longer than two weeks, so Thursday is the final date

the crowded waiting room

2009-07-11T15:25:00.005-04:00

Josh had so many visitors today! "The Amys" came down from Saratoga with Josh's friends, Matt and Jemma, and the whole Venerus family came down from Ballston Spa later in the day. Robyn's mom, brothers and spouses, cousins, and aunt all came and filled the waiting room. There are so many people that love and care about Josh and us. It has been simply overwhelming. We're glad to have all of you with us on this journey and look forward to your support the rest of the way.Thank you, thank you, thank you, thank you!

The PICU

2009-07-11T08:56:00.002-04:00

Life in the PICU (pediatric ICU) actually has it's benefits. Josh can get out of bed and sit in a chair at PICU, but he couldn't do that in his other room. He also has his own mini-bathroom that he can use. And we now have access to a laptop, so Josh can keep in touch and play games and I can continue my new career/hobby as a blogger. The laptop, as well as video games, are provided by a great organization called the Starlight Starbright Foundation. I was so pleased yesterday that I went online and made a donation.

Blessings

2009-07-10T17:53:00.002-04:00

Kelly, Morgan,and Luc drove down from Burnt Hills for the day to visit Josh. We are so thankful and blessed to have friends like you! It means so much to Josh to have his friends visit and so much to me and Robyn to know that you would schlep down here to be with us.

It's hard to believe, but Josh still has not had a seizure! Today is day 9 and still no action!

waiting

2009-07-10T11:56:00.001-04:00

Still waiting...waiting to see the docs today, still waiting for a seizure, and waiting for Josh to wake up. Still in the PICU.

Bump in the road

2009-07-09T12:32:00.003-04:00

Josh is back in the pediatric ICU (PICU), but appears to be doing well after a difficult night. He experienced unexplained shaking, which the doctors call "rigors," and sweating for about 1.5 hours last night at around 8 p.m. The rigors were not part of any seizure activity and he was conscious throughout. As a result of this, he was moved to the PICU for the night. Tests found slightly elevated levels of white blood cells, but the doctors have concluded it is unlikely that he has an infection. Nevertheless, they are giving him two new, broad-based antibiotics.

The doctors don't have a medical explanation for the rigors, only theories. One doctor said it could have been a withdrawal type of reaction to being taken off his anti-seizure meds. Dr. LaJoie, his regular neurologist, does not think so. She thinks it was a perfect storm of different variables -- extreme pain plus anxiety and stress over a number of things. Shortly before the rigors, Josh complained of a headache that was a 9 on a scale of 1 to 10. He was also disappointed that he would have to wait until Monday to have the electrodes removed.

So he will remain in the PICU for the time being. Josh actually prefers it there because the nurses are very nice and there was a nurse at the previous spot that was stressing him out. Unfortunately, the PICU has certain limits that make it less vistor-friendly and we will all have much less access to our cell phones and laptops.
The phone in Josh's PICU room is 212-263-1931.

Robyn and I are really worn out today. We split nighttime duties, sleeping at Josh's bedside in the PICU.

timeline

2009-07-08T17:09:00.002-04:00

Dr. Weiner (The Surgeon) was in this afternoon and said he was very encouraged about the location of the five sub-clinical seizures. He has scheduled Josh for surgery on Monday, assuming Josh will have typical seizures before then. After the Monday surgery -- removal of the electrodes and sealing Josh' head -- Josh would stay in a normal hospital room for a few nights. Dr. Weiner would like Josh to stay in or around the city for a few days after the surgery, as a precaution. So, bottom line, we'll be here for several more days.

Olivia

2009-07-08T16:08:00.003-04:00

Thanks, Olivia. You are such a sweet girl! I wish you could see how Josh comes alive when he speaks to you on the phone. We appreciate the sunshine you bring to his life right now.

Rx for stress

2009-07-08T10:15:00.002-04:00

Still waiting. No seizure activity yet. And, just so you know, Josh averages about 5-7 seizures per week at home. Dr. Carlson and Dr. LaJoie want to "stress" Josh today to induce seizures. That means photic stimulation (flashing light), hyperventilation, and Josh's all-time favorite, sleep deprivation.

Update on numbness/slurring speech: Both Dr. Carlson and Dr. LaJoie believe it is due to irritation and inflammation on the brain from the electrodes. Dr. Carlson, whose expertise is in intracranial electrodes, says he's seen it before. It can last for the whole time the electrodes are in or not, he said. And it will/should go away once they are removed.

Day 6

2009-07-07T12:14:00.004-04:00

So far, not much to report today. The recovery from the surgery continues to go well and that's the best news every day. We're still waiting for seizures and won't know much more until they happen. There was no seizure activity yesterday. Josh is completely off his anti-seizure meds today, so we are cautiously optimistic: Optimistic that he will have at least one seizure and cautious because his seizure may generalize into a full-fledged tonic-clonic seizure.

Since I have no medical news to report, you will all be interested to know that Robyn and I ran out of clean clothes today, so we are doing our laundry. I will try not to air our dirty laundry on the blog anymore.

From Robyn

2009-07-07T08:09:00.003-04:00

The following post is from Robyn, cut and pasted from her comments. I guard the codes and only allow her to have access for 10 minutes twice a day (just kidding!)

Good morning everyone,
I'll try to answer all of the questions here, because this is the only spot I can comment on for this thread. It's so good to hear from all of you!

Kelly, the seizures that he had the other night - the 5 sub-clinical seizures - were real spike & wave seizures, not focal slowing. The doctors want him to have a few of his "regular" seizures so that they can see if these present themselves in the same place.

Debbie,
We don't know as of yet if Josh will be going into the OR on Thursday to have the wires removed, etc. If he does, he won't be up for visitors that day. It's actually considered a second surgery. He will stay in the ICU the night after the surgery, and then be moved to a regular hospital room. We would love to see you, so feel free to call or email and we'll work something out. (My cell phone # is 518-265-2319) Love to all, Robyn

Lollie,
One of the hardest things about this hospital stay is that Josh cannot get out of bed at all. He can't even walk to the bathroom, which is abut 50 feet away from his bed! He's incredibly bored, but also tired and a bit crabby, so he doesn't really feel like doing anything. We are trying to coax him into playing games, etc. but it's difficult.

Jerry and I are so fortunate to have an apartment right next store to the hospital. It's literally 2 minutes away! After the first night in the ICU, we have been sleeping in the apartment. We know that if Josh needs us, we could be back here in minutes, and Josh really does need a break from us! We definitely are not his favorite people to be around lately ;-).

Thanks so much for all of your thoughts, and questions, and care. You're the best! We love you all.

neurology 101

2009-07-06T11:06:00.002-04:00

Good news this morning, although somewhat complicated. The neurologist on rounds, Dr. Carlson, said he saw five sub-clinical seizures on Josh's EEG in the past 24 hours, all of which originated in the right, frontal region. A sub-clinical seizure is one which shows up as abnormal discharges on the EEG, but does not manifest in clinical seizure symptoms. So the best case scenario would be if Josh has typical seizures and the EEG pattern -- right frontal -- correlates with the EEG pattern from the sub-clinical seizures.

The slurring speech/numbness issue is still somewhat of a mystery. The docs think it could be irritation/swelling from the electrodes. It is probably not Todd's Paralysis because it wasn't preceded by a full blown seizure.

Day 5

2009-07-06T09:11:00.000-04:00

Still waiting. The neurosurgeon resident was in to see Josh twice since last night to assess the numbness/slurred speech. He said Josh checks out fine. We are waiting to see Josh's epileptologist, Dr. LaJoie, to get her take on yesterday and her plan going forward. Josh is starting to get "miserable," as he says, being confined to bed. We are trying to find ways to improve the quality of his stay.

seizure?

2009-07-05T17:07:00.000-04:00

Two developments:

1. Dr. Weiner (Josh's surgeon) came in earlier and said Josh was "a model patient" and things were going just right. He tentatively put Josh on the O.R. calendar for Thursday to finish the phase one surgery. But Josh will need to have at least two or three seizures before Thursday to get a good enough sampling. If not, they will wait up to 2 weeks to get enough seizures before removing the electrodes and finishing phase one.

2. Josh had slurred speech and numbness on his left side, which may have been some kind of seizure. Those are unusual symptoms for him, although he has twice experienced something called Todd's Paralysis.

The EEG showed a "mini-seizure," although it did not present itself clinically as a typical seizure, the neurologist on call said. The abnormal electrical activity lasted quite a long time (almost 2 hours on and off) so they gave him Ativan, which is a pretty strong anti-seizure med.

neurosurgery update

2009-07-05T10:10:00.000-04:00

Two members of the neurosurgery team came this morning and had nothing but good news. The MRI Josh took the morning after surgery as a precaution was all good. He has no fever and the blood and fluid draining from his head is tapering off as per schedule and expectation. All the prayers and positive thoughts are working! Keep them up!

FYI, no balloons or flowers

2009-07-05T10:09:00.000-04:00

FYI, in case anyone was thinking about it, there are no balloons or flowers allowed on Josh's floor for safety and health reasons.

Da y 4

2009-07-05T06:29:00.000-04:00

Now, it's a waiting game. Waiting for seizures. It's ironic that we spend so much of our waking hours hoping and praying that he has doesn't have seizures, but now we actually want him to have them. (In case you missed something, the purpose of this hospital stay is to observe his seizures to determine which side of the brain they are originating from. Therefore, the more seizures, the better.)

Yesterday was another good day for Josh. They took him off morphine at about 6 a.m. and he didn't ask for any pain medicine until about 9 p.m., when they gave him percoset (sp?). As a way to induce seizures, they sleep deprived him last night until about 2:30 a.m. As if being in a hospital isn't sleep depriving enough, right? We'll see if it worked today. They have also eliminated one of the two anti-seizure meds that he takes and will reduce the other one today, to induce seizures.

p.s. the clock on this blog is early by about 3 hours and I can't seem to reset it. I am up early, but not at 3 in the morning.

cheeseburger and fries

2009-07-04T16:33:00.000-04:00

If you have a teenage boy -- or know one --then you can appreciate what I'm about to say. Josh asked for and is enjoying a cheeseburger and fries right now. It is his first real food and I know that he is getting back to his old self.

They took Josh off the morphine drip this morning. He is gradually getting his strength back. The key thing now is for him to have seizures so they can observe them.

He had a bunch of visitors today, which helps pass the time for all of us. And, as you know, Josh is a real people person, so he derives much of his positive energy and happiness from being with others.

4th of July

2009-07-04T06:42:00.000-04:00

Josh made great progress in his first full day post-op yesterday. At about 3 in the afternoon, he awoke for most of the day and was lucid and almost back to his old self. The best sign was when he said he was bored. He is still experiencing a bad headache, which the morphine seems to help. He still has not eaten anything but a few spoons of infamous hospital jell-o.

Josh has a telephone, but it is difficult for him to hear because his head wrap covers his ears. He would love to hear from his friends, although I can't promise you he won't be sleeping or being poked all over by a nurse when you call. The number in the room is 212-263-1471. He is also allowed to use his cell, so texting him is great, too.

The care at NYU is absolutely the best. He is in a room with four beds, but one other patient at the moment. He has a nurse only a few feet from his bed 24/7! This is a great comfort for me and Robyn. For our own sanity, we have to know that he is getting the best care -- and he is.

Josh read the Blog yesterday for the first time (he is actually allowed to use a laptop!). He loved hearing from you. Robyn and I love reading your comments. It keeps us all connected and reminds us of the love and support that surrounds us.

Day 2

2009-07-03T12:23:00.000-04:00

Josh has been moved out of the pediatric ICU and is on the epilepsy monitoring floor in a "mini-ICU." He is sleepy, but awake from time to time and lucid. He has a morphine pump for the pain in his head. On a scale of 1 to 10, the highest it has gotten for him is a 6. So I suppose that's good. He is also getting a steroid for swelling and antiobotics to fight possible infections.

He had another MRI this morning to make sure everything is okay. Josh will be allowed to eat and drink today and wear normal clothes. It's hard to know how his spirits are, but I will have a better sense as the day goes on.

I overheard a mom on her cell outside the pediattric ICU yesterday. She was recalling a conversaton with her son, who was recovering from surgery. She told her son that so many people were praying for him. "There's probbaly 1,000 people praying for you." When she got off the phone, I smiled at her and she smiled back. It was the kind of smile that parents exchange outside of a pediatric ICU. It says "I know what you are going through. I know how hard this is for you."

Stay positive. Please say a prayer for Josh's good health and speedy recovery.

day 1 part 3

2009-07-02T19:11:00.000-04:00

Josh is asleep and in the pediatric ICU. He looks okay, considering what he has been through. He has a complete gauze head wrap, an oxygen mask, and two drainage tubes on each side of his head to drain blood from the surgery. This will be a marathon, not a sprint.

Josh is my hero. He has endured more in his young life than most people endure in their lifetimes. He has done so with grace, humility, courage, and humor. Please pray for Josh to be seizure-free, in good health, and driving in a year.