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.
Lance
Tuesday, March 23, 2010
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
Lance
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
Lance
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.
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.
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.
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.
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.
Subscribe to:
Posts (Atom)
