Hi to ALL,
TO VIEW JESSICA ON FOX TV - CLICK ON LINK:
http://www.youtube.com/watch?v=PW_vstm0bS8
Hope this day finds you all well. Jessica continues to face each new day and the challenges that the day brings with it. Today she had to once again have a procedure in ICU under sedation. The gastroenterologist, Dr. Morales, feels that the slow motility in the intestines is sometimes seen in RSD patients due to the nature of the illness, and so, the procedure was performed to alleviate some of the symptoms she was experiencing! She continues on the antibiotics for the J-tube infection and we await results of her bloodwork to see if she can receive her ketamine booster #5. Dr. "Green Shirt" returns from his pain conference today and we are happy for his return. He has such a heart for RSD and the coma patients here. He genuinely wants your "miracle" too, and he trys to make it happen as well! He does "run the show", so to speak, so his absence is definitely felt! That's not to say that Dr. "Luigi" isn't great, because he is, but there is a sense of comfort when the "boss" is around!
Speaking of doctors, we recently heard from two of Jessica's doctors in N.Y. Her pain doctor, Dr. F., and her Lyme doctor, Dr. L. It is also so comforting to hear their voices as well! When you have been with certain doctors for a while, you do forge a certain relationship with the "special" ones. For us, Dr. F. has always been there in trying to help Jessica with her pain and to try to make her everyday life with pain, as bearable as it could be. He even made house calls! He said that Jessica was his "mitzvah" (good deed). Dr. L., is a very special doctor and a very sweet man. What he has done and continues to do for patients with Lyme, is immeasurable! Jessica would not be here today, still fighting, if it wasn't for him! He is the type of doctor who listens to you, says whats on his mind as well, and then discusses it with you once again! He is a rare breed of doctors and we are so grateful to him as well! It is Jessica's wish to work alongside him one day as a doctor! - I can see that happening for her too one day!!! Who better to be your doctor than someone who has been there!
And then, there is our sweet Dr. "Rainbow" whom we have come to know and love here in Monterrey. She is amazing, smart, funny, accomplished, loving and so, so much more! She's away for a few days and we miss her so!
So today, remember those "special" doctors that you know and thank God for putting them in your path at the right time and the right place!!!
P.S. There are a few other doctors that I will mention in another blog - so don't be upset if you are reading this blog and I didn't mention you!
Till tomorrow,
Jessica's Mom
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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 illThe 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 lesionsJessica'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 campFour 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 rashDuring 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. KirkpatrickUpon 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:
We pray for the doctors treating Jessica to get her back to a life free of pain.
Love,
Bill and Marie
Hola Ladies!
It's TGIF day! I'm sure it's hard to even remember what day of the week it is... there in Room 844, but isn't TODAY a great day no matter which one!
Your doctors are all Teaming Up so that they can get you comfortable Jessica, and since the healing is already in place (Thank you Dear Lord for that)it can take over and give you joy and your pain free life back.
May today be the best day ever on your journey!!! May each day bring you closer to relief and home again. Dr. Rainbow will just have to come to Naples if she wants to bring custard for Sweet Jessica!!
You are never out of our minds and hearts for a moment. We will keep in constant prayers of thanks until......! Until...I remember you telling the Doctor, when they asked your plans == your commitment level, Sarah Gina.... you said "Until she's well!"
With love,
Nancy
Jessica & Gina -
The Fox News report was terrific...informative and showing you as the courageous fighters that you are. I tell your story and give your blogsite to everyone I know. I missed seeing you on Saturday when you "Skyped." The fund raiser was well done by the GCFD and successful! (Who knew there was a "party room" over the truck garage!)
Constantly thinking of you,
Jane
Dear Gina,
This is Renee (Genevieve's Mom). We haven't spoken often, but through your lovely Michelle, we have had the absolute pleasure of getting to know your family. I just wanted you to know that both you and Jessica are in our family's everyday thoughts and prayers. Your blog of Jessica's Journey literally takes my breath away . . . I don't believe I have ever read anything more heartwarming and inspirational in my life! I check it daily and pray that each day finds Jessica a day better than the one before.
Please know that there are those at a distance that are hoping, praying, wishing and knowing that Jessica will get healthy again . . . May the Good Lord Bless You Both and Keep You In His Loving Care Always!
With love, Renee
Jessica and Sarah,
I came to visit Wednesday, but you were sleeping and I didn't want to disturb you. I'll be back again next Wednesday, unless you need something before then. Please don't hesitate to email or call me if you are in need of anything. I put Jessica's Blog on my Facebook wall. I've already had several comments and all have begun to pray for you and your entire family.
Gloria
Dear Jessica & Sarah,
Since i found your story today around 7:00PM, i've been reading it all through the night. I've suffered from an eating disorder for a good amount of time now, and I was lucky enough to have a doctor that basically took over the role of my mother. Without her, I don't think i'd be here. She would call me on the weekends to make sure i didn't "end up on the milk carton." She made me come see her every week, and was the only person who called me out on my b*llshit, and would send me into inpatient care. I'm so glad to have her. When I lost my insurance, she would see me without getting paid. She would stay late when the whole office would be going home just so she could get my bloodwork done. Sadly this past summer, she left the practice, because the hospital had a problem with how much time see was spending in appointments with her weekly ED patients. So tonight when I was reading your story it really touched my heart and made me cry a little bit. So I sent her an email (she still worries about me, and keeps contact) to remind her about how much she has done for me, even when I tried to let myself die. Having a doctor that actually cares about you as a real person is such a rare and beautiful thing.
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