Thank you

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!

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

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

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

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!

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

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

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

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

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

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

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

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

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

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

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

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

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!

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?

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

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

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

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

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

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

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

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

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.

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

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

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

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

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

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!

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

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

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

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.