Gammaglobulin II

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

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

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

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

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

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

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

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

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

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

Home sweet home

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!!

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

Goodbye NYC!

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

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

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

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

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

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!

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

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

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

pizza party

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

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

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

A long haul

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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?

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

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

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

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

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

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

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

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.

Day 1 part2

Surgeon just came out at 4. All went well. We'll see josh at 4:30 ish.

Day1

Josh went into surgery this morning at about 10 a.m. It will take about 6 hours. Josh is in great spirits -- relaxed, good humored, and positive. He gets more stressed before a test than he did before the surgery.

Update from last entry: The ambulatory EEG showed seizure activity primarily on the right side, but it was NOT conclusive enough to skip phase one surgery. Bottom line: we are still looking at phase 2 after this.

Thanks for all of your thoughts, prayers, and comments. It is truly a blessing.

Thanks

We would like to thank everyone for their kind thoughts, support, and prayers. We would like to express our deepest and most sincere appreciation to the Temple Sinai community for its support and prayers. We are particularly grateful to Steve and Julie Marks, the Caring Community, the Sisters Ami, and the Brotherhood for their work on the Rummage Sale Fundraiser. It has been a humbling experience to be subject to such widespread love and attention. We are truly blessed to be part of this community and will never forget the kindness that we have experienced from all of you.

We met with the pediatric neurosurgeon this week and Josh had all of his pre-op tests done. There is a very remote chance that the surgery could be done in one part. Josh will have another ambulatory EEG done this weekend and, depending on the results, we will know next week if a single surgery is possible.

Welcome

Welcome to Josh's surgery blog. In the future, I will be posting updates in this space. If you would like to comment or contact any of us, you can click the comments tab (below right) and post your message. -Jerry