Final thoughts

We arrived home safely at around 6 p.m. New York time on Wednesday, after arriving at JFK at noon. Aside from one giant disappointment, the rest of the trip went very well. But oh how we wish the opposite were true!  As one final coda to a trip that was surreal at times, I was up all night in pain and spent Thursday morning in the emergency room, where a CT-scan revealed that I have three bladder stones. Perhaps Jerry's Surgery Blog is in order?

Final thoughts, Part1

Disappointment is a powerful emotion. It can make you philosophical and cause you to lose faith and hope. Why? Why Josh?  Dr. J has performed 82 of these procedures and the 83rd, Josh's, could not be done. That's about a 1% chance.

We have spent  the past four or five days traveling this beautiful country and trying to come to terms with our disappointment. We've been looking for "silver linings," trying to make the best of the situation, and looking for as muany positive things as we can. By we, I mean Robyn and I.  Josh is hard to read. So let me start with two things:

1) Josh is no worse off physically as a result of the aborted procedure (i.e. no damage was done).

 2) So many prayers were said, so many positive thoughts were sent, so many people wore purple! It's easy to think these prayers went unanswered, and I'd be lying if I said I didn't think this myself at one point.  But those prayers and kind thoughts have touched us deeply and sustained and nourished us half way around the world.  They were not in vain.

We're on our way home tomorrow morning. I will post some final thoughts again when we return. 

The home stretch

Tomorrow is our final full day in Switzerland before heading back to New York on Wednesday. I will share some final thoughts soon about the trip.

Dog therapy

A much needed diversion at the St. Bernard Museum in Martigny.

The Matterhorn

Options

We do have options, although none seem as immediately promising as the ultra sound once was.

1. Wait for the engineers of the HIFUS equipment to solve the problem of Josh's thick skull (still no jokes, please).  This option could take a lot of time.

2. Gamma knife treatment. There is a facility in  Seattle that uses gamma knife treatments in a way that is similar to the ultra sound. Problem is it is not approved for epilepsy.

3. Autogenic training, mindfulness based cognitive therapy and self-healing.  Dr. J said along that Josh would need to do this, even if the procedure was successful. This option may not be effective in totally eliminating the seizures, but certainly  can only help Josh become happier.

Zermatt

It was always my intention to keep this blog as a chronicle of Josh's surgeries and not as a vehicle for my own feelings and experiences. I've also tried to respect his privacy and keep some of the most personal details out.  I am, therefore, reluctant  to turn this into a vacation blog. But here is a taste of the Alps. I will have a bit more to report on our final meeting with Dr. J this morning. Thanks for all of your kind thoughts and prayers as we deal with this difficult time half way around the world.

Off to the Alps

We're heading down south to the Alps tomorrow to see the Matterhorn in a town called Zermatt.  I'm not sure what kind of Wi-Fi we'll have for a couple of days.

Good bye Solothurn

I hope this diagram helps explain why the surgery could nt be done. Dr. j said there were two main reasons why the ultrasound could ot penetrate the skull and reach the thalamus. First, the outer layer of Josh's skull is unusually thick (no jokes, please). Second, the inner layer, which resembles Swiss cheese, is also unusually thick.

The ultrasound ended up "bouncing around" in the soft inner layer, instead of  going through it. The ideal temperature for the ultrasound to work is 55 C, but Dr. J could not get it above  42  because of the skull issues. So, that's the science in a nutshell.

the morning after

We are simply heart broken this morning. We meet with Dr. J at 9 to talk about options and review what happened once again.

shock and disappointment

I'm very sorry to report that Dr. J was NOT able to perform the procedure. We're all very disappointed and somewhat shocked at this outcome. We will need some time to process this and grieve. The shorthand reason for the setback is that the ultrasound waves were not able to penetrate Josh's skull because of the bone density in certain areas. More to come

Solothurn

Solothurn: Baroque era city with the most modern epilepsy treatment in the world.

The hospital

Josh still doesn't want any pics, so use your imagination!

waiting

Josh was admitted to the hospital this morning at 10 and then taken over by wheelchair to the Center.  We left him with Dr. J at 1 pm. It's jow waiting time until 5 or 6ish.

March 26

March 26. Need I say more? I've repeated the date so many times over the past several months that it's become a mantra. A mantra of hope and expectation.  This morning, I'm trying to be mindful of our journey and grateful for all the things and all the people that allowed us to arrive at this point. Wear purple and keep Josh in your thoughts and prayers today.

The Big Day

Tomorrow's the big day! Josh checks in at 10 and gets prepared for the surgery/procedure, which is expected to begin at 1 and last till 5 or 6.  Preparation will involve the installation of a metal band around Josh's head, fastened at four points.  He will recieve a local anesthesia for attaching the band.

The main procedure will have Josh on a bed inside an MRI, with a "helmet" that will shoot 1,024 high intensity focused ultrasound rays aimed at a small portion of his thalamus.  Actually four spots on the thalamus. That's my very unscientific explanation!

Josh will spend the night at a hospital next door to the Center and will be released Thursday morning at 9. We expect to chill Thursday and see how Josh is feeling.

The $64,000 Question

How will we know if it worked?  We will know this week if the procedure was successful in "ablating" the intended parts of the thalamus. Dr. J is targeting four spots, each 3-4 mm each. He said it is possible that Josh will only need one procedure because they have gained more experience with the procedure and the equipment. Nevertheless, Dr. J. wants Josh to come back in one year for a follow-up, including a special EEG that's not done in the US.

Still, we won't really know if it worked for months, or a year, or more, according to Dr. J.  It takes that long for the brain to "rebalance itself" after the procedure. I'll be posting more on the actual procedure soon.  Today is an off day and we pla to go on a day trip to Bern.

Day 1

Day 1. We met with Dr. J this morning to review the schedule for the week, answer our questions, and go over the details of the procedure. Lots of information and a lot of hope and excitement! Josh had his head shaved, but doesn't want any pics posted.  So here is Josh and Robyn in front of the Center in Solothurn.

Does anybody really know what time it is?

Arrived safely in Zurich today at 10 am Swiss time.   I don't know if I should eat breakfast and have a coffee or have dinner and a drink.  The flight was awful. I'm getting larger and less flexible and airplane seats are getting smaller. Ugh! I slept for a total of about one hour last night...or was it this morning.  We checked in to an airport hotel to catch up on our slepp and try to get oriented for the week. We start bright and early tomorrow, heading off to Solothurn to see Dr. J.

And we're off...

We're off to JFK and then Switzerland today.  Our flight leaves JFK at 11ish and arrives at about 11 a.m. Zurich time Sunday morning. It still doesn't seem real, after all the waiting, all the emotional ups and downs, all the planning.  

Health Insurance Bureaucracy

Just a week to go before our trip.  Tying up loose ends. Still waiting to hear from my health insurer.  If you thought the health insurance bureaucracy for a run-of-the-mill procedure was bad, imagine what it's like getting pre-certification for a surgery overseas in a country with a language barrier for a procedure without a billing code that's not done here in the United States. Ugh!

You know I like to keep it brief, so here it is: I started the process two months ago.  After going back and forth and back and forth, getting a denial, and filing an appeal, they told me yesterday that they have no record of my case.  Unbelievable!

Swiss Bank Account

Just about everything having to do with this surgery is different, including payments. Of course, we can’t just pay by check or use my health insurance. We have to transfer money into the Swiss bank account of the center where Josh will be having the surgery, which I did today. The words “Swiss bank account” conjure up all sorts of nefarious things to me, so I can’t help wondering if a G-man will be knocking on my door soon.

Wear Purple Day

It's either serendipity or the universe is working in its usual mysterious way, but March 26 is international Wear Purple Day to bring awareness to Epilepsy.  March 26 is also the date of Josh's surgery!

We asked you to mentally wrap Josh in "a blue blanket of love" back when he had his very first brain surgery (see May 8, 2010 Blog post), so now you can surround him with purple love and prayers.

Our plans for Switzerland are complete and we are counting down the days -- we leave four weeks from today.