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.

Lance

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.......

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.

Lance

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.

  

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.

Lance

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.

Enjoy...........

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.

Lance