Jessica's Journey: Small Steps.....Remembering 9/11

Saturday, September 11, 2010

Small Steps.....Remembering 9/11

Hello To All,

To view Jessica on Fox TV, Click on Link Below:
htt p://www.youtube.com/watch?v=PW_vstm0bS8

I have been having major problems with my computer here in Mexico and have been without service and non-working keys and so it has been difficult to blog.

I would like to update everyone on Jessica's progress here, but, first, I would like to take a moment to honor all those who lost their lives on this fateful day 9 years ago. To all the families who suffered tremendous loss that day and to all the fireman, policemen, and everyday citizens who responded on that fateful day, we remember you ALL today and we pray that a day like that NEVER happens again!

Jessica is still in the hospital and will most likely have to be here at least another 3 weeks. She is doing well and is still with much less pain. She has to remain in the hospital to receive IV antibiotics for an infection, as well as IV heparin for a thrombosis that was detected in her right arm during surgery for a new central line cathether. She is also receiving her ketamine boosters as well. Dr. Cantu also called in a cardiologist, Dr. Pozas, in order to do a study on her heart to rule out endocarditis, due to the infections she has experienced. It was determined that she has slight regurgitation in her tri-cuspid valve, but nothing to be concerned about at this time.

It goes without saying that she is a trooper.

She continues to take her small steps towards recovery everyday, even in the face of any problems. Thanks for all your continued prayers on her behalf.

The plan is to complete the necessary course of IV medications and then when all is clear - surgery to place a medi-port and hopefully back to the apartment. Please pray that the next few weeks go quickly, but smoothly.

What I have learned since embarking on this journey with Jessica is that everyday is another chance at taking those "small steps" that Dr. Cantu ALWAYS talks about. I have also come to realize that all things happen according to God's timing. Only He knows the road we will travel and we must truly thank Him for each new day --- as it is His gift to us as we rise each and every morning.

So, on this day, September 11th, let us be mindful of how precious life is and how we must never forget where we have been and what we have endured, because it makes us who we are and also because it is right to do so!

Lamentations 3:20-23

I will remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope: Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.

P>S> A very special Happy Birthday to Dr. Liegner --- Jessica's amazing doctor in N.Y. We hope you have a day that is as special as you are to us!!!

In God's love, always,
Sarah Gina (Mom to 3)***

***To Post A Comment, CLICK on Comments Below***

11 comments:

Anonymous said...: Jessica & Sarah,

Hello ladies. Glad to hear your pain is under control despite the couple other issues you are experiencing. I know you are both frustrated and ready to get out of that hospital. You are very patient and understanding of your diseases. This is why you are such an amazing person. You are able to take things slowly, look at the bigger picture, and the future road ahead.

Have a nice relaxing weekend (as much as possible), stay positive, and tell everyone hello.

Suzie; September 12, 2010 at 1:58 AM
Anonymous said...: Sounds like the doctors are on top of things! We are glad to hear that Jessica has much less pain.

We will pray the time will go by quickly and that things will continue to go well.

May God smooth out your path and bring complete healing to your body!

With love & prayers,
The Turners; September 12, 2010 at 10:18 AM
Fern said...: All I can say to this post is.... AMEN!!!; September 12, 2010 at 2:25 PM
Anonymous said...: Peace and love from Saratoga.
Hoping that each day brings you closer to your goals and God's Will.
Linda; September 12, 2010 at 4:32 PM
Rosemary and John said...: Thank you both for teaching us about Faith and Hope and Love. You remain in our daily prayers always. Love, Rosemary & John; September 13, 2010 at 5:00 PM
Natalie H. said...: Jessica and Sarah,
I came upon your blog early this afternoon while doing research on Patch Adams. After reading the wonderful letter that you posted from him, I continued reading until I had read every single post. I am 22, and on my way to becoming a doctor. I was doing research on Patch Adams for my final personal statement before sending in my Medical School Application. I'm so glad you are feeling better, and hopefully on your way to making a full recovery. This sunday I plan to put your name in my church's prayer group if thats okay. I wish you and your family all the best, and I hope and pray you will one day be in my position... One step closer to accomplishing your goal of becoming a doctor.

p.s.- How awsome will that be to say you have a letter from Patch himself! WOW!

p.p.s- To you Sarah,
You seem like an amazing mother and Jessica is so blessed to have you to stick by her side and be there for her and be strong even in the toughest of times. Stay Strong.

If you feel like e-mailing me.
nah5904@louisiana.edu

Sincerly,
Natalie Alise; September 13, 2010 at 9:43 PM
Nancy said...: Oh my Jessica! When everyone talks about missions in life and what our ministry is...Blessings just unfolded before our eyes as Natalie shares through her work the lives that will be touched as a doctor because of you and your experiences, and then your work as well. The BEAT GOES ON! You are Dr. J!

Think of all the new hearts wrapped around yours in prayer and love as Natalie shares you with her prayer family this week! Tears of joy fill my eyes as you step forward daily in those small steps of faith hope and joy and healing.

Sweet Sarah, you make me want to be a better mom. Didn't my (new)boyfriend, Jack Nickolson, say something similar to that in a movie! Had to leave you with a laugh!
My love,
Nancy; September 14, 2010 at 5:27 AM
Anonymous said...: Hi guys, I haven't been able to send you a comment. It kept saying unavailable. I don't think I know what I'm doing. Jessica, keep up the good work. You are getting better all the time and stronger too. Hugs and kisses to both of you. Bonnie; October 4, 2010 at 7:49 PM
Anonymous said...: I’m having a small issue I can’t get my reader to pickup your rss feed, I’m using google reader by the way.

financial help; November 16, 2010 at 7:41 PM
Anonymous said...: Good Afternoon

Awesome blog, great write up, thank you!; December 4, 2010 at 2:30 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.