Friday, May 14, 2010
Hi to All,
Don't know where to begin with this story - but here goes:
There have been so many things that have happened since we have been here. So much so that I am seriously thinking about writing a book about it all. The title of the book will be called: "It's A Long Story, BUT......." and each chapter will begin with a new "BUT".......
CHAPTER 13 - BUT what else can happen????
Today I was having problems with the toilet in the bathroom. So I went to the cleaning lady on the floor to get her "ayudo" (help). So she comes in and proceeds to use a tool to fix it and the next thing I know is that I start to hear water gushing!!!! With that, I start to see my slippers, sneakers, and sandals flying out from the bathroom door - one by one!!! As I approach the bathroom, to see what was going on, it was like a geyser coming out of the toilet and water --- ALOT of water --- is starting to flow out of the bathroom and into the hallway and all over the room!!!
My first thought is --- Oh No! --- My second thought is --- We are not moving out of this room! My third thought is --- What else can possibly happen???
So now, the cleaning lady is calling for back up help! I proceed to tell her to shut off the water main valve - ALL IN SPANISH. She then proceeds to get a broom - not a mop - and is "sweeping" the water into the drain in the floor! Now, mind you, this is not a major catastrophe, and in comparison to everything else, just a minor inconvenience - but, I was just not prepared for God to show me his humorous side today!
Well now the whole 8thfloor of the Hospital San Jose Tec has heard what is going on and Erika, Jessica's nurse, peeks in from outside the door to ask me - in Spanish - if there is anything she can "offer" me in the way of help or whatever. This was my response:
"Erika - Yes - you can help me by arranging for a one-way ticket to a faraway place with a lovely beach. When I get there I will need a handsome waiter to serve me margaritas and shots of tequila - and while he is at it - chocolate covered strawberries and grapes fed to me, one by one, that sounds great too! So, Erika, can you do THAT for me?"
Her response: No, Sorry! My response: Then I guess you can't help me....
With that, Dr. Cantu arrives and is wondering what is going on in Room 845. As he put it: "What mess have the two of you gotten into today???" And moments later, a man comes to the door with a big noisy machine to suck up all the water in the carpet. Loud Noise --- not a good thing!
Well - all's well - that ends well.
We are still in our room. My shoes are drying out. The fan is on to dry out the room. The cleaning lady is no where to be found. Erika still can't help me. Jessica can't make up her mind whether to laugh or cry. Dr. Cantu is gone and is probably still shaking his head....and.... all I want is a margarita - served by a "hottie" waiter on a beach...3 strawberries dipped in chocolate and a bunch of grapes....but served one by one, please..................
Love to All, from one "WET" Mom,
Sarah Gina xoxo
Laughter is sometimes good medicine!
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at 10:55 PM
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!
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!