***UPDATE: JESSICA WILL BE GOING INTO THE COMA @ 3:00 PM TOMORROW! PLEASE PRAY!!!!
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Hi to all,
Sorry I'm so late in writing this, but it took some time to get the computer on Mexico's internet.
We arrived here at 2:30 PM Mexico time (Which is 3:30 PM) USA time.
Because of Jessica's previous flight, it was the doctors recommendation to sedate her better for this flight as well as continuous oxygen and monitoring while on board. The flight crew (Victor-paramedic and Christine-ICU nurse) used all of the versed on board in order to safely sedate Jessica but she still woke up in between doses! They were phenomenal! They even came with us in the ambulance ride from the airport to the hospital to keep her medicated for the grueling, bumpy, 45 min. ride. In Spanish you say " muy rapido" to go faster - we were saying the opposite - "Muy despachio" - go slower!!! The pilot and co-pilot did a fantastic job in getting us all here safely. Special thanks to Steve - the President of American Aviation Jets for meeting us at the airport in Tampa and for his words of encouragement. Grandma Josie and Uncle Vinnie saw Jessica off as well! Also, special thanks to our trusted ambulance crew in Tampa - Jason & Eric - they were great and even gave Jessica a stuffed animal bear which we affectionately named "Buttdoll" in honor of their last names!
Now, about Mexico and Dr. Cantu and the hospital. It is a state-of-the-art hospital. As you know I have been in many hospitals over the past years between David and Jessica and I must say this is the cleanest, modernist, spacious room hospital I have ever been in. The nurses do not speak English but my Spanish is in full swing already and by the time we are back I may have to learn English again! Dr. Cantu is as sweet in person as he was on the phone and he is very handsome also. Upon seeing Jessica and in conference with the other doctors, they have determined that Jessica's case is indeed a complex one, but are hopeful that with this coma study/treatment we will see the light at the end of the tunnel.
SPECIAL NOTE: It is possible that Jessica may go into the coma as early as tomorrow - Saturday August 22nd. I will keep you posted, so please pray for Jessica and keep the comments coming, I read them to her everyday!!!
All our love, always, and in God's love,
Sarah Gina (Jessica's Mom)
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." ~Jeremiah 29:11~
Friday, August 21, 2009
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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.
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 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.
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.
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.
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!
6 comments:
Dear Jessica & Sarah.. IU am so happy that you arrived safely in Mexico. I received moms phone message today. I will keep that phone near me when I am home. If you give me a mexico number I can call you from that magic jack number. Our prayers and love will be with you each step of the way. We love you both so much and want you both home as soon as possible. Love you... Aunt Carol & Uncle Anthony
Jessica and Sara Gina,
I've been thinking and praying for you since I heard that you were on your way to Mexico. Glad to hear that you made it there safely. I'll continue to keep you in my prayers.
Julie Scerbo
Jessica & Sarah Gina,
Please know there are many, many people praying for you both. The light is at the end of the tunnel.
Love, Carol & Ray XXOO
P.S. We are looking forward to meeting "Buttdoll" lol
My thoughts and prayers are with you.
I will begin Padre Pio's novena tomorrow.
Love, Nancy Ernenwein
Hi Jessica and Gina, I'm so glad that you made it to Mexico safely! We are praying for you over here everyday (Day two of novena) It sounds like your doctors and nurses are wonderful and will take excellent care of you. We will keep them in our prayers as well. Hang in there! Love always, Angel
Dear Jessica and Family
Welcome to Mexico, we arrived on wednesday and because of time I couldn't say good bye in Tampa. Your mom called me and we spoked over the phone, and let me tell you something, your mom is a verry nice person. Jessica I want to tell you an incredible story that happened to us in Tampa, before Dr. Kirkpatrick did the ketamine treatmet to Anthon, we had to go and see the cardiologist becaused he had high blood preasure, so they did a stress test, and it didn't go well, the doctor thought that his situation was dangerous as he could have a heart attack, so he decided to perform a heart kath on him, there was 99% that his arteries were blocked. While the doctors were completely sure he had a sirious problem because his stress test was positive, when he had his kath his arteries were not blocked. There were only colesterol deposits wich could be handled with diet. The Doctors said these was a verry strange case, but we know that it is not a strange case, it is a MIRACLE, so I just want to tell you that miracles do exist, never give up and have complete faith that you are going to get well.
Anthon was verry happy to know that you were in the hotel, it is always good to know that you are not alone with these desease. We wish you a verry successful treatment, we will pray for you and your family.
Pili and Anthon
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