Jessica's Journey: "The Great Escape"

Saturday, November 21, 2009

"The Great Escape"

Happy Saturday to All,

TO VIEW JESSICA ON FOX TV - CLICK ON LINK:

http://www.youtube.com/watch?v=PW_vstm0bS8

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SPECIAL NEWS ABOUT NECKLACE:
The special necklace that was designed in honor of Jessica is due to be launched tonight! I am still waiting on the links and info so that it can be posted accurately on the blog. As soon as I have the info I will post how the necklace came about with a special note from its creators. The necklace is beautiful and I know that you will all want to have one for your very own. Keep checking back during the day for the updated information and photos!!!

Update on Jessica:
Jessica received another booster yesterday to try and alleviate the right side pain that is still plaguing her. The nerve block that she received two days ago initially worked to reduce one aspect of the pain, but it did not last very long. She describes the pain as burning, shooting, stabbing pain. We ask for continued prayers for relief from that pain as well as for her vision to return - as she is still experiencing the "static vision" that began almost two months ago. It is like watching a TV that is experiencing difficulty and is all thick "static". And the color of this static is green - lime green - of all colors!!! It has made her road here difficult to say the least, as I'm sure you can only imagine! It is an unexpected obstacle that she has had to face and deal with and it is very distressing to her! For Jessica it is horrible and it needs to go away! Thank you for your continued prayers for her eyesight to return!

Devon's Great Escape:
On a happier note, Jessica's fellow "coma buddy" Devon successfully left the hospital yesterday to return to Connecticut. I say successfully because it isn't the first time she has tried to leave the Hospital San Jose! Here is the story of Devon - aka "Escape Girl":

Just a little background info: When you first go into the ketamine coma you are in the ICU initially for the 5-6 days you are in the coma and then you remain in ICU for the following 4-5 days for monitoring before you are released from ICU to the 8th floor.
While Devon was in the ICU post the coma, the doctors thought that something may be wrong with her brain because she initially was unresponsive for the first few days upon emerging from the coma. She didn't speak, blink or move. Tests were performed and no answer could be found for why this was happening to her. It wasn't until her release from ICU and onto the 8th floor, did the answers unfold. You see, Devon is called "Escape Girl" because she is the first coma patient that tried to "escape" from the hospital and, as she later confided to Jessica - the "escape plan" was devised in those 3 days down in ICU. Devon says that if she did indeed have any type of brain injury, it was only because the ICU nurse braided her hair too tightly, as they tend to do to all female coma patients! The reason she wasn't speaking , she says, was because she was planning her "escape" during that time and she didn't want anyone to know her plan. So, on one of the very first nights on the 8th floor, while her Mom Cathy was fast asleep on the couch in her room, (exhausted after being awake for five days straight while Devon was in the coma) she decided that it was now or never, so Devon escaped!!! She carefully disconnected herself from all her IV's, tucked the catheter bag into her pajama bottoms, slipped thru the crack of the cranked hospital bed, by lifting the head and feet as high as they could go, took off her hospital gown for a more normal top that she retrieved from her suitcase on the floor, and proceeded to the service elevator; even eluding detection from the nurses by going down a different hallway!!! You see, she just wanted to go back to the hotel - where she knew her Aunt Tracy and twin sister Caroline were staying --- she wanted "out"!

She managed to make it down 8 floors, past the PB lobby, and ultimately, from sheer exhaustion and the detection of a security guard, landed of all places right in front of the chapel that is located in the hospital and she was stopped right there! She initially lied to the security guard by saying she was her twin sister Caroline who was visiting her sick mother in the hospital and did not need any help. It was the catheter bag sticking out of her pants that ultimately gave her away. (Also - its a long story - but Nancy, who was here helping me with Jessica at the time - was called down by security because they thought she was one of Devon's family members and it was Nancy who revealed to them that this indeed was Devon, a coma patient, and that wheelchair assistance was needed as soon as possible and with that Devon was whisked back to the 8th floor)

When Devon was finally returned back to her room on the 8th floor, Jessica and I could hear the commotion and activity that was going on outside of her room. It was on that day, after we found out what happened, that Devon became "Escape Girl" and a legend in her own right! Jessica wanted to become escape girl! She wanted to be able to try to "escape" as well, even though in Jessica's case, she knew her legs could never bring her there, as she has been unable to walk for the past few years! Nevertheless, she was named "Escape Girl" that night and the name stayed with her for the rest of her stay here in the hospital! I also presented her with her "ketamine coma Escape bear" - fully decorated with black & white stripes - and her "prisoner" number 845843 - to signify the two rooms she occupied while here in the hospital. (that's another story for another day) I know that her family at home will get a kick out of her bear - to say the least - and that it will always remind her of her journey as well.

So, today, we wish Devon (aka "Escape Girl") "godspeed" in her "new normal" life because, as I have said before, you cannot go thru something like this and think that your life will be the same. It will be what I term a "new normal" in that you have to realize where you have come in your journey to wellness, but, at the same time you have to respect where you have been, and what you have been through, to realize where you are at! I hope that makes sense.........Hope to see you soon Devon in the "states" and we wish you and your Mom Cathy (who, by the way, became very special to me as we shared a time here that we will never forget) all the best! Have fun reconnecting with your Dad, sisters Caroline and Nicole and your whole extended family as well, including your cats Chloe, Ollie & Annie!
We wish you well and pray for God's protection over you!

From Mexico, with love,
Sarah Gina (Jessica's Mom)

***To post a comment, CLICK on Comments below***

3 comments:

Nancy said...: Bye Bye Escape Girl!!!
Jessica keep up the arm exercises so you can be Escape Girl #2!!

Praying for your eyes to see clearly again!!

Can't wait to see the link for the necklace too so we can all be linked with one more visual connection!

With love and hope and hugs,

Nancy
PS: You are such a HOOT Sarah Gina with the bears!!! Your talents are such a blessing to those you touch!.
:); November 21, 2009 at 2:49 PM
PSS: Nancy said...: PSS: Wayne, Renee and family and friends & employees....Oh my Goodness...what a wonderful gift you have given to a beautiful family!! We should call this journey "Heart 2 Heart"
:)

Just wanted to say thank you too!
Nancy; November 21, 2009 at 2:53 PM
Anonymous said...: Jessica, your escape will come! Hang in there! I am sure both you and your mom will miss the company of Devon and her mother as time passes very slowly in a hospital. I hope that they are able to join their new life with very little in the way of setbacks.
I wish you all the very best in getting to the bottom of your vision problems! Please give our greetings to Dr. Cantu and Dr. Zavalas (Dr. Rainbow) as we think of them often as well as you.
Monday will be a Ketamine booster for me but they are still much better in the hospital in Mexico. Nothing compares to the care there!
Be well and have a good weekend

Theo and Fern; November 21, 2009 at 5:48 PM

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Jessica's Journey to Getting Her Life Back

By Sarah Gina (Jessica's Mom)

As we begin this journey toward renewed health we would like to express our sincere heartfelt thanks and appreciation to Dr. Anthony Kirkpatrick and all the work he has done and continues to do in order to bring patients like my daughter Jessica back to a more meaningful life and restored from this devastating illness. Also, special thanks to Dr. Fernando Cantu and his team of doctors in Mexico for taking on a difficult case like my daughters, Words cannot express the renewed sense of hope that we have that one day, our Jessica, can regain her life that has been taken away from her – God Bless you all!

Jessica’s Story

Once an A+ student who loved school, was involved in many extracurricular activities, played varsity tennis, lacrosse and gymnastics and enjoyed spending time with her family and friends, our daughter Jessica has spent the last 3 years incapacitated, paralyzed, unable to sit or walk and eat. She spends her days confined to a hospital bed, wearing sunglasses and noise-canceling headphones, due to severe light and sound sensitivity.

Jessica and her sisters, 2 mos. before becoming ill

The pain she feels is indescribable and all attempted treatments have not even come close to relieving her suffering.

She has seen many doctors, undergone numerous painful tests and procedures, has been prescribed various medications, and has been hospitalized frequently including being intubated and on a ventilator. She is severely debilitated and currently is only 92 pounds. This is certainly no life for a 21 year old young woman!

Jessica is suffering from neurologic Lyme disease and Reflex Sympathetic Dystrophy (RSD), a severely debilitating and painful neuromuscular disorder. She suffers daily with constant sharp, stabbing, tingling and burning pain; throughout her body; severe headaches; paralysis; intense muscle spasms; gastroparesis; seizures; twisting of her limbs (dystonia); sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; excessive sweating; swelling; fevers; softening of bones; decreased hair growth; redness and discoloration of the limbs; and painful skin ulcers. The pain is constant and unrelenting, but despite her suffering, her faith in God remains and she still has hope for her future.

Jessica's painful skin lesions

Jessica's journey began in 1999, when she was only 11 years old. She became very ill with Mono and was bed bound for 3 months. She subsequently developed RSD (stage 1) of the lower right leg. She received early intervention and returned to playing sports and enjoying her life.

Jessica, age 15, at summer camp

Four years later, in 2003, while away at a sleep-away camp, she developed a rash behind her right knee, coincidentally in the same leg that previously had RSD!

At the time, the camps nurse & doctor told her that it was “duck rash” – a rash from swimming in the lake with duck feces. However, Jessica was able to obtain photos from camp from another camper which shows the classic “bulls-eye” rash from Lyme disease! It wasn’t until much later and only after developing symptoms and becoming very ill, was the diagnosis of Lyme disease and Babesiosis (another tick-borne infection) made.

Most people (and doctors!) have no idea how serious Lyme disease can become and no clue how to properly diagnose it. Unfortunately, if she would have been promptly diagnosed and treated for Lyme disease, the RSD would not have been triggered and she would not be suffering.

July 2003, Jessica's Lyme disease rash

If it wasn’t for her doctor, Dr. Liegner, and his expertise with complex cases of Lyme, and his determination to try any means in getting her well, by getting a “team” of doctors on her case, we wouldn’t be here today, still fighting. We owe him a deep sense of gratitude for all he does for Jessica!

During these past three years and with the pain becoming more intense and unbearable she has been seeing Dr. Finkelstein for pain management. He has even made house calls to spare her the pain of coming by ambulance to his office. Jessica has been treated with multiple pain medications, at the highest possible doses, as well as an implanted dilaudid pain pump, which delivers potent medication straight into her spine. Many doctors have told us that with the amount of medications Jessica was taking would be enough to “kill a horse”—yet they had little to no effect on her. If it wasn’t for Dr. Finkelstein trying to alleviate her constant, severe, unrelenting pain, I don’t know how she would have managed. He is very special to us as well.

Recently Jessica was transported by air ambulance to Tampa, Florida to see Dr. Anthony Kirkpatrick, a world renowned RSD expert. Dr. Kirkpatrick told us that Jessica is one of the most debilitated patients he has ever seen.

Jessica getting into the air-ambulance to go see Dr. Kirkpatrick

Upon his testing and because Jessica's condition is so severe, Dr. Kirkpatrick is recommending the only treatment available that can possibly help relieve her suffering, and afford her some semblance of a “normal” life - the Ketamine Coma Procedure - a clinical trial that is being conducted in Monterrey, Mexico.

During this procedure Jessica will be put into a coma , with the hope that her nerves, brain and spinal cord will “reset” -so that her nervous system sends the correct signals to her brain.

Yes, this is a radical, scary treatment, however, for Jessica, "scary" is thinking that she could spend the rest of her life in this condition, unable to walk, eat, or take care of herself. Since all reasonable treatments have failed to help her, we feel we must try everything possible to help Jessica regain her life.

We understand that due to Jessica’s fragile condition, there is a high risk associated with this procedure. We are also aware that other patients with severe RSD like Jessica's have had success.

Jessica’s goal is to one day become a doctor. Our hope is that with this study she can have that chance. As her Mom, I know that she will be a great doctor because when a patient presents in her office and says “Doctor, I am in pain and words cannot express how bad it is” – my daughter –Dr. Jessica– will be able to say - :I know how you feel, I’ve been there too. So, take a seat and let me tell you a story”….

We are so thankful and feel so blessed to have been led to Dr. Kirkpatrick.

God is good and with his help guiding Dr. Cantu and Dr. Kirkpatrick, our hope is for Jessica to be able to return to us whole again and pain-free!

What is RSD?

Imagine what it would be like to endure a burning sensation so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire...

Reflex Sympathetic Dystrophy (RSD) is a painful & debilitating chronic neurological disorder that occurs when the nervous system malfunctions in response to a injury or illness- in Jessica's case- Lyme disease.

RSD is characterized by: Continuous sharp, stabbing & burning pain; Extreme sensitivity to touch; Severe headaches; Painful skin ulcers; Intense muscle spams; Softening of bones; Dystonia; Skin temperature & color changes; Hair/nail growth changes; Muscle atrophy; Vascular & Autonomic dysfunction; Sensitivity to lights & sounds and Paralysis.

This rare condition is a mystery to scientists & often is misdiagnosed. Much more research is needed to find the cause of RSD and ways to treat and prevent it.

Ketamine Coma Study

The Ketamine Coma Study is a clinical trial procedure being conducted in both Germany and Mexico, that is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options.

During this procedure, patients are put into a ketamine-induced coma-- essentially shutting the body down & giving it time to "reset" the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.

So far, only about 100 patients have taken part in the study. For many, it has been miraculous!
However, like any treatment, there are no guarantees. There are also significant risks, especially in Jessica's fragile condition.

The Ketamine Coma shows great promise as a treatment for severe RSD- the key is going to be more research.

What is Ketamine?

Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. It was developed in the 1970s as a medical anesthetic for both humans and animals.

There are currently three kinds of ketamine treatments: The Awake technique (continuous low dosage for 4-5 days), the Outpatient low-dose infusion (4-5 hours a day for two weeks, then gradually-lower doses), and the Coma technique (continuous high dosage for about a week).

The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and "reboots" the patient's brain, much like a computer.

Ketamine can have some nasty side effects. Especially when emerging from the coma, patients may experience hallucinations, lack of body awareness, visual distortions, confusion, and weakness.

Why Mexico?

There is a popular misconception that medical care in Mexico is of inferior quality. However, this is not (always) the case. In fact, many facilities in Mexico are state of the art, with top notch care.

Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries.

Jessica's doctor, Dr. Anthony Kirkpatrick, is one of only a few specialists involved with this study in the U.S. He has teamed up with Dr. Fernando Cantu and his team in Mexico to perform the Ketamine Coma.