Thursday, July 1, 2010

Hurricanes & Ketamine

Elana and I have returned to Monterrey for another four day ketamine infusion with Dr. Cantu.  However, as any well mannered guest would know, it is impolite not to bring a gift when someone invites you to their home.  To that end, Elana and I decided to bring Hurricane Alex with us to Monterrey.  It has poured here non-stop for two days (we arrived yesterday afternoon (6/30/10).  The city of Monterrey is completely flooded and the dry river bed that bisects the city (Imagine if Dixie Highway was a dry river bed; I apologize for the Miami reference) is almost half way filled and is roaring like the Mississippi River.  Fortunately, all we are going to have to deal with is rain and a little wind.  We are not going to get it bad like those who were on the coast where the Hurricane hit.

As I write this, Elana is in the middle of her first infusion.  Obviously it is too early to tell how effective today's infusion will be and we really won't have a good gauge until we get back home to Miami next week.  I am confident that this will help her as the last two weeks have not been so great back at the ranch. Yet, Elana was able to power up and come to Jesse's 3rd birthday party.  I am still smiling from seeing her there watching her son enjoy his big day.  Elana has missed nearly every party, every school event and play date the last two years.  She is now just starting to attend some of these sort of functions, which most of us (including myself) take for granted.

I hesitate to say we have turned a corner.  I think the more appropriate metaphor is that we can see a corner up ahead but we are not sure exactly how far ahead the corner is.

Wednesday, April 28, 2010

Live from the ICU (again)

Never a good sign when the nurses from the ICU remember your name when they see you.  As some of you know, Elana had to have another procedure this week that also required a 48 hour stay in the ICU.  Because, it is almost impossible to find a vein to start IV's, Elana had to have a MediPort installed on Monday.  A MediPort is a permanent IV that is inserted just below the skin.  Elana's MediPort is just below her right shoulder.  The other reason she needed the MediPort is that the RSD has spread to her right hand as a result of all the IV needles that were required there during her last stay in the ICU following her gall bladder surgery in early March.

Although the procedure is relatively straightforward and is usually done outpatient, for Elana there is no such thing as a simple procedure.  Because there is an incision and a trauma to the skin, in order to prevent the RSD from spreading to the MediPort area, Elana requires a 48 hour ketamine infusion.  While it is not necessary to have an infusion in an ICU setting, Mt. Sinai Hospital requires that Elana have the infusion in the ICU because it does not have any experience with ketamine infusions (except for Elana).  As a result they want to have maximum control and support during the infusion.  Therefore the safest place for her to be is the ICU.  I don't have a problem with it and I am just happy that they are providing the infusion in the first place.  Although, it adds a sense of unneeded alarm when I tell someone that Elana is in the ICU.

Like, everyone of Elana's medical treatment and procedure's this one required enormous amounts of coordination between several doctors.  At the head of the coordination effort was one of my closest friends, Dr. Michael Rogoff.  As the doctor who performed the procedure he had to coordinate the anesthesia and ICU in addition to managing the various hospital administrative obstacles.  From the very beginning, Michael took control and never showed anything but optimism and resolve as the different hurdles were placed in his path.  Thanks are not enough for his work to make sure this procedure happened in the short window of time that we had to perform the procedure.  As I have played golf with Michael nearly every week for the past 10 years, I am sure that he knows I am still going to try to kick his ass the next time we play.  I am also certain that he would not want it any other way.

As always, Dr. Brett Kandell provided the anesthesiology support and has become an integral part of Elana's permanent medical team.  For sure, this procedure and every other procedure that Elana has had at Sinai since the onset of the RSD could not have happened without Brett's consistent support and continuous effort.

Lastly, Dr. Farcy of the ICU once again offered his support to this procedure by permitting the ICU to open its doors to Elana after the surgery.  That would seem like a given, but I can assure you that there are no givens when it comes to treating RSD and only with Dr. Farcy's active support could we have provided Elana the essential post surgical care.

Today (Wednesday 4/28/10), Elana's infusion will finish at 10:00 am and she will transferred to a regular hospital room the rest of the day.  Elana will sleep at the hospital tonight as a precaution, and if all goes well, will come home tomorrow morning.  Next Thursday, Elana will return to Monterrey, Mexico for a another series of ketamine infusions with Dr. Cantu.  After a very stressful last three months following the Coma, the hope is that this infusion will help Elana get back on track with her recovery and will lead to significant improvements going forward.

One final comment.  As anyone who has dealt with an ongoing medical issue, there is no auto-pilot or cruise control when it comes to managing care.  I am personal friends with nearly everyone of Elana's doctors.  We are fortunate to have access to major supporters of both Mt. Sinai and University of Miami who can provide access otherwise not usually available.  I have the personal cell phone of everyone of Elana's doctors and can call them 7 days a week without issue.  However, even with all that, every single  procedure and treatment requires enormous amounts of coordination and follow up.  Without fail there are miscommunications and inadvertent mistakes made by administrators and sometimes even doctors too.  You can never take anything for granted and every commitment needs to confirmed and reconfirmed several times.  I mention all this because I know there are times when I am not myself when I am talking with friends or family.  Sometimes, I may appear to be aloof or not concentrating on the conversation I am having at the moment.  I ask for your patience and understanding because I assure you the only thing I am thinking about at those particular times is what do I have to do next for Elana's care and treatment.  It is very hard for someone like me, who always wants to be in control of a situation, to have to cede control to others when it comes to such a critical issue like my wife's treatment.

Thank you all for your continued love and support.  It is always welcome and appreciated at all times.

Friday, April 2, 2010

Mexico Round 2

Tonight I am writing this post from home while Elana and Abby (My Mom) are spending their first of four nights at Hospital San Jose in Monterrey, Mexico.  Yesterday morning (Thursday 4/1), Elana and Abby flew to Monterrey and after a delayed departure from Miami, a missed connection in Dallas and a suitcase mishap in Monterrey they eventually arrived around 9:00 pm last night.  By the way, if you are wondering, I don't call my mother Abby when I am speaking to her but it is just easier to write Abby than my Mom every time I refer to her.

After staying at a hotel last night, they checked into the hospital this morning and were quickly brought to their hospital room where they will be living for four days.  They are actually right next door to Jessica Stevens.  I am happy to report that according to Jessica's mother, Sarah, there has been some improvement but unfortunately they are still at the hospital going on eight months.

Dr. Cantu came by around mid-day to get the ball rolling but unfortunately they were unable to start the IV in Elana's arm.  Because of all the IV's that Elana has had in the last few months in addition to the fact that it has always been very difficult to find a good vein in Elana's arms, Dr. Cantu had no choice but to start a central line in her upper chest area.  A central line is not as simple as an IV and must be done in a procedure room with the patient knocked out.  Elana will probably have to have a Medi-Port inserted in her chest when she comes home so that she can receive future infusions without the problems of starting an IV.  One of the other problems that all the IV's in her right arm has caused is RSD like pain and redness in her hand.  We are hopeful that the ketamine infusions will beat down any onset of RSD in that part of her body before it gets a chance to settle in permanently.

Dr. Cantu decided rather than do a standard infusion tonight, that Elana would be served best with a continuous, low-dose infusion of ketamine during the night (15 mg/ hour).  Tomorrow he will administer the first of three 2 hour infusions where Elana will receive approximately 750-1000 mg of ketamine.

While things have not gone exactly as planned, Elana is in good hands with Abby and Dr. Cantu.  I spoke with her earlier this evening and she was in good spirits.  Obviously, I miss her terribly and don't like the fact that I am not there taking care of her and controlling the situation.  However, Elana and I decided that it was best for me to stay home to be with Jesse as he has been without both of us for a good part of the last two months when you combine the first stay in Mexico, the 10 days Elana spent in the hospital after her gall bladder surgery and the near week spent in Rhode Island after Elana's father passed away.  We have been very fortunate that Jesse has continued to thrive and remain a happy little boy the whole time. We know we HAVE to do everything that we are doing, but it does not alleviate our concern about how this whole ordeal has and / or will affect Jesse.  Jesse knows mommy has a boo-boo in her foot and that she has to go to "sleep" in Mexico.  We look forward to the day when this is all in the past and maybe he does not even remember that mommy ever had a problem to begin with.

Tuesday, March 23, 2010

Dr. Kopel Rothberg (b. 1945 - d. 2010)

Early Saturday morning (3/20/10), Elana's father, Kopel Rothberg, passed away from complications related to Parkinsons.  About 10 years ago, Kopel started his fight against "Early Onset Parkinsons".  He never gave up in his determination to overcome the disorder.  He tried every medicine and treatment he could, even going as far to enroll in a study that included implementing electrodes in his brain to combat the debilitating effects of Parkinsons.  He had several mini-recoveries along the way where he would show drastic improvement in many areas.  Unfortunately, the Parkinsons proved to be relentless in the last few months and overwhelmed him despite his best efforts.

I do not believe it was coincidental that his eventual "descent" began shortly after he made a heroic effort to fly to Miami by himself to visit Elana a few days before she left for Monterrey, Mexico to begin her Ketamine Coma Trial.  I still have no idea how he made the trip because it was obvious that he was in very bad shape.  However, he was determined to make this trip no matter how difficult or dangerous it might be for him.  While he may not have known and certainly showed no signs of giving up, he probably had a sense either consciously or subconsciously that this was going to be his last opportunity to see Elana and wanted her to know he loved her and was supporting her fight against RSD.

As I write this, I am in a hotel room in Rhode Island about to wake Elana up so she can get ready for the funeral.  It is a miserable day outside, forty degrees and raining.  Clearly a day of mourning.  This week culminates the most incredible and trying two months of our lives.  Beginning with Elana's well chronicled Coma Trial in Mexico, then continuing with Elana's gall bladder surgery upon her return home from Mexico and resulting complications that forced to make two trips to the ICU for a total of seven days following the surgery and now finally the passing of her father; I would not believe that this all could happen in one continuous wave if I had not lived through it and seen it myself.  (forgive the run-on sentence).

I don't know where Elana gets the strength to endure, as she never feels sorry for herself or seeks pity.  She continues to forge on knowing with full certainty that better days are ahead.  Elana has shown some meaningful improvement and we are encouraged that there will be continued improvement as she continues her post-coma protocol.  Next week Elana is returning to Monterrey for 6 days for a ketamine infusion that we hope will springboard her to starting her water therapy sessions in mid-April.  There is some symmetry that Kopel passed away on March 20th.  The idea that "hope SPRINGS eternal" never seemed more appropriate.

Health and Happiness to you and yours.


Thursday, March 4, 2010

I Couldn't Make It Up If I Tried

At 3:00 p.m. today Elana was released from Mt. Sinai Hospital on Miami Beach after spending two and half days in the hospital for gall bladder surgery.  If you are saying to yourself, how much more misfortune can one person endure, you are probably not alone.  We have not even put away the suitcases from Mexico and she is already back in the hospital.  However, what you probably don't know is that this, we only learned recently, is actually an old problem that Elana was suffering from and we finally arrived at a solution.
If you recall from earlier posts, I explained that Elana had not eaten solid foods in almost a year.  I was actually trying to remember the last time we went out to a restaurant for dinner, and the only one I could come up was in Providence last summer.  There may have been something since, I just can't remember it.
We had explained away Elana's gastrointestinal issues as a symptom of RSD as RSD can cause the same pain that she was experiencing.  What is worse, is that Elana's job as a pharmaceutical sales rep was to call on GI doctors.  She is well versed in many matters related to the stomach.  As Elana would say her territiory was from the "gut to the butt".  Even though we could have gone to any one of several very well respected GI doctors who each would have been happy to do a full work-up for Elana, we just kept on assuming it was the RSD.
While we were in Mexico, Dr. Cantu suggested that we see a GI doctor anyway when we got home.  That led to the Ultra-Sound which led to the finding of several large gall stones.  We met with the Surgeon on Monday and Elana was had the surgery on Tuesday (3/2/10).  I am happy to report that the surgery was successful and Elana is now sleeping in her own bed as I write this.
Thanks are not enough for her wonderful team of doctors at Mt. Sinai who all banded together without regard to ego, turf, status or any other possible obstacle to high level patient care.  I feel compelled to mention them by name:

Dr. Stephen Unger, the surgeon who performed the surgery and now only needs to do a surgery on Jesse in order to complete the Hellring family surgery triple crown.  In 2006 Dr. Unger took out my appendix.

Dr. Brett Kandell, the Anesthesiologist, who I have known since high school and was willing to take the lead in coordinating all of Elana's pre-op and post-op care.  This is the second time Brett has made sure that Elana got the correct surgical protocol as it relates to her anesthesia before, during and after her surgery.  In January of 2009 Elana had a cysectomy and Brett, even though he was less than a month on the job stepped in to save the day.  It's too long a story and way too medically dense to describe what Elana needs, as RSD patient in order to have a safe and successful surgery.  What I can say is that, for Elana, the surgery is the easy part.  The Anesthesiologist, in my mind is the key player to make sure Elana is safe before, during and especially after the surgery.

Dr. Arin Newman, the GI doctor, who is also a good friend of the family along with his wife, Dr. Rachel Newman and their daughter Madison , who Jesse was putting the moves on in the picture I posted of the two of them in Jesse's jeep. Arin, cleared the path for Elana to get into his office right away once we got home and then made sure Dr. Unger got the full briefing before we saw him.  We would probably still be waiting to get scheduled for surgery if it were not for Arin.

Dr. Susana Gonzalez, Elana's internist, who has been tireless for two years in not only doing anything we have asked, but in coming up with idea's to make Elana comfortable.  Anytime there is an issue, she makes time for Elana, no matter how busy she might be.  While we were at the hospital she made sure that Elana was receiving timely and attentive care from the nurses and made sure the boat never veered off track no matter how high the waves got.  I know that sounds like a trite metaphor, but if you have ever had to spend a night in ICU, you know that it can be very intense and having a strong advocate, like Dr. Gonzalez helps immeasurably.

In addition, Dr. Farcy, the head of the ICU, and his staff did a solid job in managing Elana's case.  They were not very familiar with RSD and were willing to listen to me and Elana's other doctor's as they set out her post surgical protocol.

Of course,  I must thank Dr. Cantu for advising the entire medical team on how to manage an RSD surgical case.  There is no way the surgery and Elana's post op care would have happened the way it needed to if it were not for Dr. Cantu's unmatched ability to communicate in a way that automatically breeds trust and friendship.  In my opinion, Dr Cantu could stop practicing medicine and make a fortune training doctors and health care providers on how to treat patients and colleagues.

Also a special thanks to Dr. Ken Ratzan, Dr. Alex Ferro and Dr. Greg Michael for taking the time in the middle of the day to come by and say hello to Elana while she was recovering in the ICU.  I hope the smile on Elana's face when she saw all of you walk in the room was worth the effort you made to make the out of the way visit.

Many of you have asked how is Elana post-coma.  The answer is: It is too early to say how beneficial the coma trial was for Elana.  Although she still has severe pain in her foot, there has been a legitimate reduction in the pain.  If it was usually an 8 or 9 it is now a 6 or 7.  We believe that with the continued infusions and water therapy, that Elana will continue to see a reduction in the pain.  I don't know if this effort will yield a single, a double or a home run but I do believe we are going to get on base and more importantly stay on base.

I have no idea how many of you will read this, as I had told you that I was likely to retire my blogging hat in Mexico.  However, Elana asked me to provide a follow-up once the gall bladder issue came up.  Now that we are back home from the hospital and it appears the worst of the recovery is over, I felt I was in the clear to give a report on the recent events.

I hope all is well with you and yours


Tuesday, February 16, 2010

The Last Night in Monterrey

After three weeks, we have finally come to the end of our stay in Monterrey.  In many ways it feels like we have been here for three months, but I can still remember the day that Elana started the Coma like it happened three minutes ago.

Elana is still in pain, but that was expected.  First her body will take weeks to recover from the trauma of the Coma.  Second, while it might have been wishful thinking (and I have done a lot of wishing lately), it was not realistic to think that the pain in her foot and shoulder was going to magically disappear.  The pain in her foot is definitely less than it has been at its worst but Elana is still in a lot of pain.  That does not mean the coma was a failure by any means.  What it does mean is that Elana is going to have to exert herself almost beyond tolerance during her water therapy sessions that will begin in approximately one month.  We hope that the water therapy combined with additional ketamine booster infusions over the coming months will continue re-train her brain and foot and further reduce her pain while at the same time increase her mobility.

One thing we know we accomplished was getting Elana of the of the Opioids (Oxycontin, Vicadin & Morphine).  Before the Coma she was taking all of those drugs in ridiculous amounts every day.  After two years, they were no longer helping her, in fact they were actually making her pain worse.  In no uncertain terms she had become addicted to those drugs.  Like anyone who is addicted to pain killers you   continue to take them to help with the pain of not having the drugs.  At a certain point they cease to become useful in treating the initial pain.  Who knows when that train left the station for Elana.  All that matters now is she is no longer taking them.

I know I have said it on several occasions, but it definitely deserves repeating how much I want to thank  all of you who followed and commented on the blog, sent e-mails and text messages of support, and inspired me the whole time I was was here with how much love, caring and appreciation you have for Elana.  I know how great Elana is.  Obviously, that is why I married her in the first place.  However, it never gets old reading how much she means to all of her friends and family as well.

I really have not shared much with Elana about the Blog and the comments.  I want her to go through it when she has built up the required mental and physical strength.  I, along with all of you, have shared this blog experience over the last three weeks.  Elana will become a part of the blog in time.  I am really hoping that seeing Jesse, being home, and thinking positively about the many challenges ahead will help lift Elana's spirit and give her the strength she needs to continue fighting the RSD.  I know that when she reads the blog and all the e-mails she will be inspired to battle beyond what she maybe even believes are her own limitations.

It goes without saying that this will be an experience we will remember for the rest of our lives.  Hopefully because of this experience, the RSD will not define Elana for the rest of her life.  I am not definitely saying that this is the last blog post, but I can not tell you when the next one will be.  
Until the next time.........Thank you and good night.

Monday, February 15, 2010

Infusion Day

I was feeling a little over-blogged that last day or so, not to mention there had not been much new news to report.  In addition, I found some random live tv streaming video site on the internet and spent the last two nights watching the NBA all-star game events.  It was definitely worth all the viruses and spam that I probably infected my computer with in order to download the required software.  Especially, considering Dwyane Wade won the MVP.  I'm not worried, one trip to the Apple store and all my problems will go away.

As I write this, Elana is about 20 minutes into a ketamine infusion treatment.  This infusion will take about 2 hours and will wipe Elana out for most of the day.  This is standard protocol for Coma patients.  Usually, the day before the patient is released from the hospital, Dr. Cantu will administer a booster infusion to help remind the brain that it needs to shut off the pain alarm.   It is not enough to injure the RSD, we must keep beating on it until it is in full submission.  At least that is the hope.  Elana will probably have another 6 or so infusions over the next 3 months in order to keep the RSD at bay.

We are so close to leaving I can smell it.  Tomorrow morning, Elana will be released from the hospital and after a night of rest in the hotel, we will fly back home on Wednesday.  For all the right reasons, I am looking to retire my blogging jersey very soon.

Saturday, February 13, 2010

Could the End be Near?

Big improvement over night.  Elana did not sleep for long but it was longer than the previous nights.  The diarreah seems to be really calming down.  Same goes for the dizziness and nausea.   She was able to get out of bed almost entirely on her own.  In addition she put on her pajama bottoms this morning.  All very encouraging signs.  The doctor will be here in the next hour or two and I am hopeful that we can put into place a plan for leaving the hospital and going home.

Obviously, the toughest part about going out of town for an extended period of time, as any parent would agree, is being away from their children.  While Skyping has been great, nothing can fill the void of getting a hug from your child or reading a bedtime story.  In addition, there are many father-son interactions that I am missing but hope to make up for when I return.  However, I was incredibly proud to see that Jesse has mastered, on his own the "arm over the shoulder, on the head rest" move when he is driving with a girl in the passenger seat.  Like the pick and roll it is a classic fundamental move that never fails when executed properly.

Friday, February 12, 2010

Slow Days, Long Nights

A little improvement today.  Elana was able to get out of bed and sit in a chair a half a dozen times for a few minutes at a time.  Still suffering from the diarrhea, nausea and dizziness but not as bad as yesterday.

Really not much else to say other than that.  Days are going by pretty slowly right now as Elana is frustrated at the slow pace of her recovery.  Even though the doctor explained what to expect after she woke up, I think she was so focused on the coma portion of the process that she did not spend much time thinking about how she would be feeling after the coma.  I can't say I would have done much different.  Your about to go into a coma for 6 days; the last thing on your mind is going to be how your going to feel after you wake up.  The only thing you could possibly be thinking is, "Will I wake up?"

My mom has picked up a cold so she can't come to the hospital anymore.  Therefore she is going to go home on Monday, because there is no point in her being here anymore.  Unfortunately, she could not get a flight out of here any earlier than Monday because of all the weather problems in Dallas the last few days.  My mom has been a warrior for the past two weeks.  Everyday, she would come to the hospital at 7:00 in the morning to relieve me so I could go back to the hotel to sleep.  She would stay in the ICU or the hospital room for over 12 hours a day helping to make sure Elana was cared for.  It is understandable that a mother or father would do whatever was needed to care for their child.  I might be wrong, but my guess is that there are not to many mother-in-laws who would volunteer to go to Mexico for two and and a half weeks to help care for their daughter-in-law. It goes back to one of my earlier posts about how my parents feel  about Elana and how they care for her as if she was their own daughter.

It's late here and Elana is sleeping.  She has not been sleeping much since she woke up from the coma.  Hopefully she can get a few hours of sleep tonight and make some additional progress tomorrow.

Thursday, February 11, 2010

A Step to the Side

Today was not the success we had hoped for but we did have a little victory when Elana was able to sit up on the side of the bed for about 5 minutes before the dizziness and nausea forced her to lay back down.  The hope was that she was going to be able to get out of bed and sit in a chair and maybe even use the bathroom on her own.  She didn't reach that goal today but I am hopeful that we are close; maybe tomorrow.

I actually saw a commercial today on CNN international for a Nigerian Bank.  Now I know where all the money is that all those Nigerian businessmen need my help to transfer funds to their Swiss bank accounts.

There was one person who thought it was funny that Elana has to wear a diaper while she is suffering from diarrhea and can't get out of bed.  When we Skyped with Jesse tonight and told him that Mommy has to wear a diaper too, he started cracking up and said "Mommy is not a little boy, that is funny." At least that brought a smile to Elana to face.

Time to get back to Law & Order (even though I have already seen this episode at least 2 times).  Feeling good about tomorrow.

Wednesday, February 10, 2010

Who needs USA network?

I have been sleeping in the hospital since Saturday night.  However, last night I upgraded from a chair in the Surgery / ICU waiting room to a couch in Elana's hospital room.  Most of you, at one point or another, have pulled all-nighters at a hospital.  Never easy and never comfortable.  That's when AXN saves the day.  What is AXN you may ask? AXN is a tv channel in the hospital room that features US crime dramas like Law & Order, CSI and NCIS.  The best part is that all the shows are in english with spanish subtitles.  When you are here for the reasons we are here, you need to enjoy the little things that we don't even give a second thought to back home.

Elana has had tough day.  One of the common after effects of the Coma is horrible diarrhea.  Elana has been suffering with this along with nausea and dizziness ever since she woke up.  However, for the first few days after the coma Elana did not realize what was going on so it was not really bothering her.  However, the last three days, as she has gotten over the hallucinations and become more aware, it has become more difficult for her.  All of this is usual and customary for Coma patients according to Dr. Cantu but it does not make it any easier to deal with.

Tomorrow could be a turning point in Elana's recovery.  The plan for tomorrow calls for Elana to attempt to put on her own pajamas in the morning (that will definitely make her feel better).  And then in the afternoon, when the doctor arrives, she is going to attempt to sit up and possible get out of bed for the first time in 12 days.  If she is able to handle that, then going home may not be too far off.

Tuesday, February 9, 2010


February has turned out to be the both the best and worst month for Elana and me.  Of course, July is a great month too because that is when Jesse was born.  February is the month Elana and I were engaged (2/14/01) & married (2/9/02).  However February is also the month that Elana hurt her foot and developed RSD.  Yet, now the month of February will always include our time here in Monterrey, we which we hope will be a success.  I can take a 3-1 ratio.

If you paused a moment ago to check your calendar, you noticed that today is our 8th wedding anniversary.  There is not going to be any dinner at Prime 112 or a trip to Vegas this year but we will be celebrating it together which, now more than ever, is the most important thing I can think of.  Dr. Cantu may release Elana later today from the ICU and transfer her to a patient room upstairs in the hospital.  That is better than any present I can give because it means we are one step closer to coming home.

Elana is becoming more lucid and her restraints have been removed.  She is continuing to eat soft foods, and drink more and more.  Her voice has improved as well.   Lastly, I want to thank the many people who we don't know who continue to send kind words and warm wishes.  At the same time, it has been nice to read comments and e-mails from friends of mine who I have not seen or spoken to in many years.  I'm sorry that for whatever reason we lost touch, but it felt good to re-connect.

Monday, February 8, 2010

Post Coma - 48 hours

Please to report that Elana is doing a little better and is a more coherent and less agitated than she was yesterday.  She is drinking from a straw and eating a little jello.  If she keeps improving, the doctor may release her from the ICU and into a patient room at some point tomorrow.

Elana needs some WHO DAT fortune now so we can get her feeling well enough to go back home.

I am sorry that I have to keep this post short as I have to go back to the hospital now.


Sunday, February 7, 2010

Post Coma - First 24 Hours

It has been a long day/night.  I just woke up and washed up after a short rest this morning back at the hotel. Called to the bullpen around 7:00 am when my mom came to the hospital to relieve me.  Elana was awoken from the coma and extubated about noon time yesterday.  She was responding to commands and definitely recognized everyone around including the names of friends and family.  The first smile came to her face when I mentioned Jesse's name.  However, she is still suffering from the Ketamine hallucinations and the effects of withdrawal of the opioids (Vicadin, Morphine & Oxycontin) she was taking before the Coma.  She is very restless and get can't get comfortable.  We still have to keep her arms and legs tied down to prevent her from hurting herself or damaging the central line. On top of that her throat is incredible sore from all the tubes during the week so she can't really talk except for a few raspy whispered words that after about thirty times I can barely understand and really don't make any sense.

I am hopeful that she will do a little better today.  Time to go back to the hospital.  Will try to give another update tomorrow.  Onward.......

Friday, February 5, 2010

The End of the Beginning

In about 15 hours from now, Dr. Cantu will begin to bring Elana out of the Coma.  While they stopped giving her ketamine today, they decided to keep her down for one more day (using only propofol) to help soften the "re-entry".

I hope it helps because I have been told to expect some pretty crazy stuff over the next few days.  Apparently, some patients even have temporary memory loss and don't recognize their spouses, children etc.  That will all pass in time.  The key is to just keep her as calm as possible and not let Elana injure herself.

I'm not counting any chickens here, but so far Elana has had a relatively uneventful coma.  I have no idea that that means going forward, or if it has any correlation to the potential success of the coma.  I figure it can't be a bad thing.

I wish there was more I could say or do.  I may have to go offline for a day or two as I will be with Elana around the clock pretty much the rest of the time we are here.  Maybe there will be a chance to give a quick update.  Either way, THERE WILL NOT BE ANY WAY TO DETERMINE THE SUCCESS OF THE COMA UNTIL AFTER WE GET HOME.  While the Coma week is all about getting through safely, Post-Coma is all about nursing back to health so she can travel back to Miami.  We are not even allowed to ask her about her pain.  The reason for this is that she is definitely going to be in pain after the  Coma.  She is going to feel like a train ran over her.  Therefore, we don't want her thinking or confusing the Coma pain with the RSD pain, if the RSD pain has indeed subsided in full or in part.

Remember this is a disorder of the Auto-Nervous system.  The ketamine coma is all about shutting down and re-training the brain.  I guess the best way to think of it is that the pain alarm went off in her body two years ago and never stopped.  Imagine the most painful thing that you have ever endured and then imagine that pain as constant for two years.  Then imagine the pain increasing with each passing month.  That is RSD.  Everyone would always ask me how Elana was doing and was she having a good day.  Unfortunately, the answer for an RSD patient is "There are no good days, only bad days and worse days".  If you can't imagine or fathom it, you are not alone, neither can I.

Lets hope and pray good days lie ahead.

All of your e-mails, voicemails and blog comments helped me get through the week.  I am forever grateful.


Thursday, February 4, 2010

No News is Good News

First the Medical Report.......
Elana is still doing OK.  Her temperature came down early in the day but then went back up a little bit in the afternoon.  Still the doctor is pleased thus far with how she is doing.  Tomorrow morning they will stop the Ketamine.  However, the doctor may decide to keep her in the Coma for an extra day just to help soften the landing from the Ketamine.  The doctor will make that decision in the morning as he stops the Ketamine.  My guess is that he will keep her down for the extra day because waking up from Ketamine is very hard transition on the mind.  However some patients react more to it than others and don't get the horrible hallucinations and terrors that are usual and customary with Ketamine.  We will have to wait and see tomorrow.  The reality is that this ride will start to get very bumpy the moment she wakes up whether it is tomorrow or Saturday.  
I know what it is like to be by Elana's side for days at a time but even with that experience I don't think there is any preparation for what lies ahead.  I know I can handle whatever comes my way but it would be easier if I knew exactly what to expect.

I am definitely looking forward to her waking up and having to take care of her.  That will mean we are in the recovery mode and that much closer to her feeling better.  
At the same time, I am sick of CNN and crappy food.  You can only watch so much Wolf Blitzer.  "So Senator, just so there is no confusion for our worldwide television audience, you are going on the record as saying Tuesday is before Wednesday AND the day after Monday as well."  

One last thing, I attached a picture of Jesse eating Pizza.  Jacob Ratzan and Evan Goldman, my best friends since high school, came over tonight picked Jesse up and took him out for a Guys Night Out.  You guys are the best.


Wednesday, February 3, 2010

Losing Track of Time

Elana is still doing OK.  She still has a slight fever and Dr. Cantu has put her on antibiotics.  This is very normal for Coma patients.  For the Coma week, no news is very good news.  You fear hearing from the doctor things like, "this is unusual" or worse, "we have not seen this before".  "Boring & Uneventful" are exactly what we want this week.

I think the Vegas Syndrome has set in.  My mother and I have to keep asking and reminding each other what day it is.  I have never been so exhausted doing absolutely nothing.

Tomorrow marks two milestones.  The first and not so significant is that we will have been here one week. It feels like we have been here a month.  I was on Skype with Jesse yesterday for the first time since we left and he looked like a totally different kid with long hair.  Not easy when he is asking where Mommy is?  I tell him she is "sleeping".  Unfortunately that is something that he is used to because Elana would spend much of the days at home passed out in bed from the drugs and pain.  The reality is that he only knows Elana as someone with a "boo-boo" on her foot.

The second milestone is more remarkable in that tomorrow marks two years to the day from when Elana broke her foot.  Part of me wants to figure out how many of those days were spent in hospitals, doctors offices and traveling for treatments in Philadelphia and Tampa.  I think I am too scared to know the number.  I guess if I was going to figure out how many days were spent with doctors I would also have to figure out all the missed birthday party's, weddings, and other events with family and friends that Elana was forced to miss.

Obviously the social circle shrinks quite a bit when you are going through this.  But there was a special group of friends who continued to try to make plans with us or Elana individually even though they knew that the likelihood of Elana going was slim.  We are eternally grateful to those of you who it was more important to give Elana the hope of looking forward to doing something fun rather than the having the security of firm plans on a precious weekend night.

I want to also extend a special thank you to Lauri & Randy Kassewitz who picked Jesse up the other day to take him to the park to play with their son (and Jesse's good buddy) Jackson.  Then they went out for Pizza.  Of course Jesse came home and threw up all the Pizza but that is S.O.P. for Jesse.  Most guys have to go to college to perfect the boot & rally but Jesse has perfected it at 2 1/2.

Lastly, after we visited with Elana today, my mother and I went up to the 8th floor to visit Jessica & Sarah Stevens.  If you remember from my previous post, Jessica developed RSD after suffering from Lyme disease.  I am being euphemistic when I say, Jessica is in rough shape.  We had a very enjoyable conversation with Jessica and her mother Sarah.  Despite seeing firsthand someone who is suffering from immeasurable pain and has been here in Monterrey for five months, I actually walked out inspired by Jessica's spirit and toughness.

I'm actually watching the Miami Heat play the Boston Celtics right now.  I'm not sure why I bother because the Heat will find a way to blow it somehow at the end of the game.


Tuesday, February 2, 2010

Guest Blogging

Since I had never read a blog, let alone written my own blog before this, I had no idea how the "blogosphere" actually worked. I see that a blog can take on a life of its own depending on who reads it. This has allowed an interaction that could not have taken place if I had just sent out mass e-mails. Not to mention, this avoids the inevitable "reply to all" that ultimately clogs everyone's inbox.

One of Elana's close friends (I am withholding her name unless she wants to identify herself) sent me note to post on the blog. Knowing Elana's love of good shoes and good drinks, I thought that this was a perfect post.

I would like to interrupt this blog to give Lance a break. We, as a collective group of friends who love you and Elana, want you to keep going. Take a walk, eat a meal, take a nap.
This is day three of an incredibly long week and we got a few more to go so, stay strong Lance. We love you. Oh, and by the way, I’d like to take a moment here to propose something. I’d like to propose a permanent name change, or an acronym change for “RSD”. Yep. That’s right. I’d like, when all is said and forever DONE, for “RSD” to stand for something else please. My first proposal is as follows (and all followers feel free to jump in with your own suggested change): I propose for "RSD” to not stand for reflex sympathetic dystrophy but instead be the abbreviated way to refer to my cocktail. Really Strong Drink. Yep. That’s right. It’ll work – as I see it, I’d be standing at a bar (with Elana standing next to me in both of her killer Louboutin’s) and we will both order a vodka & soda. And then, picture it with me please, Elana will lean across the bar and say “and make it an RSD!”.
Do I hear any seconds on this motion????!!

54 hours

It feels like it has been a week but it has only been 54 hours since Elana started the Coma. So far Dr. Cantu is happy with how the Coma is going. She is running a slight fever but that is normal for Coma patients. They are taking throat, urine & blood cultures to see if there are any problems that may require antibiotics.

Ordinarily, at this stage in the Coma, the patient would be"under" with only ketamine. However, in about 20% of Coma patients, propofol (if that sounds familiar, it is because that was the drug that killed Michael Jackson) is needed to keep the patient completely "under". At some point during the night, Elana actually sat up and tried to remove the tubes from her mouth. Again, this is not uncommon for Coma patients. Regulating the amount of ketamine is both a science and an art. It is impossible to know beforehand how much ketamine will be needed to snow the patient over.

However, the amount of ketamine she is receiving on an hourly basis is staggering compared to how much she received in Tampa during her 3-day infusion treatments last June and October. I can tell you that at 200 mg /hr, which is the highest dosage you can receive at any point during the 3-day infusion treatment, your mind has left the planet and you are severely hallucinating. For those of you who prefer colloquial terminology; you are tripping your face off and have no idea who or what is real. And Elana only was receiving that highest dosage for 1 1/2 hours of the 4 hour infusion. Over the course of a 4 hour infusion in Tampa, Elana would get between 550 -600 mg of ketamine (approx 135 - 150 mg / hr). As Hans and Franz used to say, "Hear me now & believe me later", that is a lot of ketamine.

By comparison, On Sunday, she started with 240 mg /hr on a continuous basis. On Monday it was raised to 320 mg / hr & today it was raised again to 400 mg / hr. Today she will receive in excess of 9000 mg of ketamine. You can only imagine the party going on her head at that level. All kidding aside, she is probably having extreme and terrifying hallucinations. At the same time she is beginning to go through the severe effects of withdrawal from all the opioids (Vicadin, Morphine & Oxycontin) that she was taking in heavy dosages each day. This is a good thing, because it would have been almost impossible, and probably not so safe, for her to remove the addiction in a conscious state. The reality is that when she wakes up she is still going to be going the effects of withdrawal and the hallucinations. According to the doctor and those who I have spoken to who have gone through this, the toughest days will be after she wakes up. At that point I have to be with her 24 hours a day so she has something and someone familiar and calming with her at all times.

Sorry for all the medical talk. Time to call Jesse and find out who is favorite basketball player is. Some days it's Kobe other days it's D-Wade.


Sunday, January 31, 2010

The First Night

I want everyone to know that I am at a loss for words at the outpouring of support we have received over the last few days. Between the comments on the blog, the texts, and the dozens of e-mails, I am moved to tears thinking about the love you have for Elana. Don't think I don't realize that this all about Elana. On her worst day, Elana is kinder and sweeter than I could ever hope to be on my best day. This is not false humility. Anyone who knows me will tell you Elana is everything that I am not. All my friends like Elana more than me. My own parents, I am pretty sure love Elana more than me. Who would blame them. I know they would trade me and about 10 first round draft picks for her any day of the week.

I have received e-mails from people who I have never met, who know Elana from her pharmaceutical rep days. I have even received e-mails from friends of friends of Elana who maybe met her once or twice but remember how warm and caring she was to them however many years back it may have been when they met her.

I was not sure if I was going to do this, but I know Elana would want me to share this with you so you can be a part of this coma process in a way more than words will allow. I have attached a photo of her in the ICU unit from this afternoon after the doctors induced the coma. If your not comfortable with seeing someone, especially someone you know and care about, in this sort of condition, be comforted in the knowledge that she is receiving excellent care. She has no less than five different doctors here who are all involved in the coma trial. In addition there is a nurse stationed at a desk immediately outside her room (not to be confused with the nurses station) whose only responsibility is to monitor and make sure Elana is cared for.

Again, I want everyone to know that I have read each and everyone of the e-mails, posts and texts that you have sent. I just can't respond to them all so I am using the blog to respond to all of you to say thank you and please keep in touch. I'm am saving every message for Elana to read when we get home.


Coma Day

Five minutes ago (10:30 am local time) my mother, Elana's mother & I walked out of the ICU. We had the opportunity to be there with Elana as they were getting her IV started (it took three pokes to get a good vein). I was the last one of us to kiss her before they asked us to leave the ICU. As I was telling her that I love her she started to fall asleep.

Right now they are preparing the feeding tube and ventilator and they will begin administering the ketamine. The doctor told us that unlike what most people envision when they think of someone in a coma, Elana will be moving her arms, legs, head and even her eyes. Because of this they have to restrain her arms and legs to prevent her from ripping out the feeding tube and IV. I don't imagine it will be a very pretty sight to see her in this condition. However, I am comforted knowing that this is road to a better quality of life. Whatever short term pain she and the rest of our family have to suffer through as a result of the coma procedure, will be well worth the potential result.

I'm am in a little bit of a daze right now as I am still internalizing that the next time I see my wife she will be in a coma. Obviously we have been thinking about and preparing for this for a long time but it still has not set in.

I feel like I want to write more, but I am having a hard time finding words right now. Maybe later or tomorrow I can share more.


Friday, January 29, 2010

Meeting the Doctor

Today we met Dr. Fernando Cantu for the first time. I'm already feeling encouraged. He came to our hotel room because Elana can't get out of bed today. We spoke with him mostly in general terms about what lies ahead the next few weeks. Tomorrow he is coming back to the hotel to discuss more specifics and will spend private time with Elana as well. I believe he is a talented and capable doctor, BUT I KNOW he is a warm and caring person after spending an hour with him.

Earlier this morning my mother and I visited the Hospital San Jose to get a tour of the ICU (where she will be during the coma) and the patient rooms (where she will be post-coma). I can say without a doubt this is the NICEST, CLEANEST & FRIENDLIEST hospital I have ever been to. You can eat off the floors and the patient room is bigger than our hotel room. While this won't apply to us, they even have a flat screen tv in the waiting area that monitors the progress of surgeries so that the families of the patients can know the status of the surgery (ie: 30%, 50%, 90% etc.).

I have attached a link to the website where you can read about and watch videos of all of the Coma patients, including Elana.

We all know that Elana is in bad shape, yet today we met the mother of 22 year old girl from New York who, if you can believe it, is in much worse shape. Jessica Stevens developed RSD when she was 11 after a bout with mono. She was able to get the RSD into remission with physical therapy. Several years later she developed lyme disease after she was bit by a tick. That caused the RSD to come back much worse than before. She has been in the hospital in Monterrey for FIVE MONTHS! After the coma she has had many complications because of the lyme disease. While I feel that we have gotten more than our fair share of perspective since this all began, I guess a little more can't hurt.


Thursday, January 28, 2010

Travel Day

We arrived Monterrey this afternoon. It took a while for us to get through security in Miami. TSA doesn't react well when you tell them NOT to touch the foot. Thanks Underwear Bomber.
However, the flights were on time and we got to the hotel with no problems.

Tomorrow we meet Dr. Cantu, who is in charge of the entire clinical trial. We have only heard great things about him from the other coma patients who we have spoken to.

I am exhausted, so I am going to bed.


Wednesday, January 20, 2010

8 days away

As many of you know, Elana is going to Monterrey, Mexico on January 28, 2010 to be a part of clinical trial that calls for her to be in an induced coma for one week. In the past, for Elana's previous treatments, I have sent e-mails out to friends and family with information and updates. However, Elana asked me to create a blog and post the events of our time in Mexico. I am not really sure what is the difference between sending an e-mail out and blog post, but this is what Elana wants, so this is what Elana gets. Since I have never been on facebook or twitter nor have I ever posted a blog before, I feel quite technologically forward as I write this today.

While we know the coma will begin on Sunday January 31st and the Doctor plans on reviving her the following Saturday, there is very little else for certain about the treatment. According to the doctor, after she wakes up from the coma, Elana will need to remain in the ICU for several days until she can eat solid food and respond to commands. Once she gets released from the ICU, Elana will spend the next several days in a regular hospital room, where the doctor will continue to monitor her recovery from the coma. If all goes according to plan, and there are no complications, Elana's total stay in the hospital could be around two weeks. No need to list the potential complications that could extend her time in the hospital.

As we begin another chapter in Elana's battle against RSD, I want to thank all our friends and family who have continued to support Elana and me with your visits, phone calls, e-mails & texts. Every time you reach out to Elana it helps immeasurably. I look forward to sharing good news with you over the next few weeks.