Next stop:Switzerland

Josh had his stitches removed yesterday and Dr. Weiner said he is healing very well. We obtained a copy of Josh's latest head x-ray and have forwarded it to Switzerland to get the final okay. Once we get the okay from Dr. Jeanmonod to proceed, we will be making our reservations and travel plans. Yeah!

Removing stitches

Josh will return to NYC on Tuesday to have his stitches removed and the wound looked at by the neurosurgeon. His recovery has gone well and we're making plans to make plans for our trip to Switzerland.

3,443!

Google Blogger allows me to track how many views Josh's Surgery Blog has received and I'm really quite astonished. There have been 3,443 views since we started the blog for Josh's first surgery in 2009.  I never imagined that it would become such a great vehicle for us to communicate with our friends and family. For us, it's another indication of how blessed we are to have your support and love and kindness. Happy Thanksgiving and Happy Chanukah!

Living at home

Josh hasn't lived at home since January, so it's kind of a homecoming of sorts to have him here recuperating.  The last 24 hours have, thankfully, been uneventful for him.  Josh doesn't appear to be in too much pain, he's eating meals, and hanging out with his friends. He will have to return to NYC in two weeks to have the stitches removed and the wound checked out by the surgeon. Signing off for now, but will post any updates, as needed.

Home Sweet Home!

We arrived home safe and sound. A coating of snow on the ground greeted us. It seems like we have been away for months.  I'll update some more soon.  Thanks for all of your support, visits, and prayers.

Hoping to go home

We're hoping to go home sometime today.  The docs were in and said Josh is medically ready to be discharged. His second drain was removed and he's resting.  Josh still has not really eaten very much, so that will be the next challenge.

Trying to keep positive

Josh's recovery has not been as quick and smooth as we had hoped. He still has not eaten much of anything and all he wants to do is lie in bed and rest. His pain level fluctuates between a 5 and a 10. He's gone for a few short walks and sat up in a chair a few times.

It's hard to keep perspective in here. In reality, Josh has been out of surgery for 48 hours, which is not that long.  But, considering he was only supposed to spend one or two nights in the hospital, we are a bit worried and concerned.

One more night

Josh will have to stay at least one more night. They removed one of his drains and said they will wait until tomorrow to remove the other because the wound is still draining. He was in pain after the drain removal, so they gave him a morphine drip.

We are realizing that hospital time is like another time zone.  The doctor will be in soon means sometime in the next several hours.  When the nurse says I'll be right in that means in the next 20 minutes.

We are starting to really appreciate the high level of care and attention Josh got the last two times that he was in the PICU.  Either the quality of care at NYU has declined or the non-PICU care is just worse.

Final day?

We could be heading home today, if the docs give Josh the okay. Given his condition, however, that seems unlikely to Robyn and me. He still has not eaten a real meal and he still has the drains connected to his head. (The drains are like giant bulb-like earrings filled partly with blood and attached to his gauze-wrapped head by tubes).

A long day

It seems like we have been here for a week. Josh is making small strides toward recovery. He walked a few times around the 12th floor and is able to stay awake for longer periods of time.  He/we enjoyed having visitors tonight -- Sid, Lisa, Barbara, and Matt. Josh, as everyone knows, is a people person and perks up for visitors. Hoping for bigger strides tomorrow.

A room and a shake

Josh finally got a room and is resting comfortably.  He had part of a chocolate milk shake from Baskin Robbins, which has been his traditional first post-surgical food after his previous surgeries. Looking forward to visitors tonight. Robyn and I appreciate all the calls and messages.  It can be kinda isolated here in hospital-land.

Upright

Josh looks much,much better! He was upright and went for a small walk to the bathroom. He will have a room soon. Dr. Weiner was in to see him and said all is well. It feels like we are out of the woods.

A long recovery

Josh spent the whole night in the recovery room because there were no beds in the neuro ICU. We left the hospital at about 10:30 and he was still pretty out of it, after some four hours in the recovery room. The nurse said he should have a room later this morning.

He looks good, but is in a lot of pain.  He told the nurse it was a 10, told us it was a 15.

recovery room

We saw Josh in the recovery room at 7:45. He looked pretty good, all things considered. It was still heart breaking to see my baby with tubes and wires and a gauze head wrap.  He's very courageous. He gets that from his mom. Waiting for a room and a good night's sleep.

green to blue

134367 just went from green to blue. Its kinda like some weird game of bingo. We should see Josh in recovery room soon.

All good

Dr. Weiner just came out to say the surgery went well. all the plates and screws were removed and Josh should be in recovery in 20 minutes. Yeah!!

134367

134367.  Thats Josh's surgey number. We're staring at abig screen TV in the waiting room, waiting for 134367 to go from green to blue. (from in surgery to out of surgery)

Into OR @ 4

Josh went into OR @4, after long wait! I'll update ASAP.

The Wait

The wait begins. Josh will be admitted at 2, but can't eat or drink anything, so he's in bed sleeping. We expect him to go into the o.r. at 3ish and the surgery should take about 2 hours.  So we should know something at  5-6ish. Keep you posted.

Surgery at 2 pm

Long day today. Josh met with his neurologist on L.I. We then  visited family, dropped off the car and took the LIRR back into the city. Surgery tomorrow at 2 p.m. Say a prayer for Josh.

Sleepless in NYC

Josh finished the sleep study yesterday afternoon and is off to an appointment with his neurologist, Dr. Lajoie, at LIJ today.

The doc at the Sleep Institute said Josh has a lot of epileptogenic electrical activity going on throughout the night, which is preventing him from getting a good night's sleep. His nap study found that he is sleepy during the day. Okay, tell me something I don't already know! The doc also said Josh does not have sleep apnea.

It was great to see Joe, Linda, Aya, and Mia! Visitors always welcome!

Sleep Study Day 1

Josh checked in for his sleep study yesterday afternoon at the NY Sleep Institute. He is attached to a gazillion wires, as they monitor his EEG, EKG, body movements, teeth grinding, and every possible sleep event or  activity.  He said the wires are worse than the upcoming surgery. We'll see about that. Today he has a full day of "nap studies" during which he is awake for 1.5 hour intervals and is asked to nap for 20 minute intervals. The study apparently tests for narcolepsy. Looking forward to visits today.

What is Epilepsy?

November is Epilepsy Awareness Month and the Epilepsy Foundation has produced a terrific video called Understanding and Assisting People With Epilepsy.  Please check it out at: You Tube Video.

Dates, dates, dates

Josh has a date for surgery at NYU on Nov. 21 to remove the plates and screws.  He will likely spend a couple of nights in the hospital and return home around the 23rd. He also has a date for Switzerland for March 26, 2014! More details on that to come.

The Switzerland Roller Coaster

It has been a roller coaster of emotions.  Plans, broken plans, hopes and disappointments.  As if living with Epilepsy alone is not enough of a roller coaster!  I'm happy to report that we are at the top end of the ride right now.

First, we had a date for surgery in Switzerland for the first week of November and we thought that all of our waiting was coming to an end and our hopes were riding very high. But, as we approached the date, Dr. J reviewed Josh's head x-rays and determined that he could not proceed because the titanium plates and screws in Josh's head from two previous brain surgeries would be too much of an impediment for the high intensity ultra sound used in the procedure. The date was canceled indefinitely and we all sank to a new low of disappointment.

But, as Sonny said in The Best Exotic Marigold Hotel: "Everything will be all right in the end...if it's not all right, then it's not yet the end."

Dr. Weiner, the surgeon (and terrific human being) who performed Josh's two prior surgeries at NYU said he could remove the plates in a procedure that is not too complicated or risky. The surgery is not inter-cranial (or is it intra-cranial?) and the hospital stay should be one or two days. Dr. J then told us we could proceed with the procedure in Switzerland about thee months after the plates are removed!

So our hopes are that Josh will have the plates removed at NYU sometime in the beginning of November and we can travel to Switzerland for the ultrasound procedure sometime in March. I will try to post again soon with more details.

Good news on the horizon!

We recently heard from Dr. Jeanmonod that he will be ready to schedule a surgery for Josh sometime after September.  He has performed 40 surgeries with the new procedure without a single negative side effect, he said.  He has also been able to operate within a half-millimeter of precision. Good news!

Good news, bad news

There's good news and bad news on the Switzerland surgery front.  The good news is Dr. Jeanmonod has gotten approval for his procedure and is ready to proceed (http://www.sonimodul.ch/atelier/index.cgi?path=MainTopic_about_SoniModul&B&News&&s=en&&key=&&id=).  The bad news is it will be at least another six months or a year before he will be working with patients with Epilepsy, including Josh. Ugh! It's very disappointing and frustrating.

It is likely that Josh will be one of -- if not the first -- patient with Epilepsy to have this procedure done.  You know I love baseball metaphors, so I'm hoping Josh becomes the Tommy John of Epilepsy. So, in future cases of refractory Epilepsy, a doctor might recommend that a patient have The Josh surgery done! Wouldn't that be nice?