Saturday, October 17, 2009
Jessica Is A Fighter!
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Sorry I didn't blog yesterday. Jessica has had her share of struggles that she has had to deal with, not only since we have been here in Mexico, but also for the past four years dealing with Lyme disease and all of its multiple complexities, and RSD with all of its debilitating and painful symptoms! But Jessica is indeed a fighter and she has somehow found the strength to deal with every obstacle that has been thrown at her! I don't know if I could have endured what she has had to endure. Quite frankly it has been too much for one person to have to bear!!! Added to the struggles of this past week, we are currently dealing with her bloodwork which has revealed elevating liver levels which have been going up for some time. To try and figure out what is causing it, the doctors have had to slowly eliminate all medications to see if any of them are the source. Yesterday, the last few that were remaining were stopped to see if that was the culprit. As you know, the liver is very important and many factors can be causing these high levels. We are awaiting todays results, but it is concerning for us and the doctors as well due to the high count.
Please pray for Jessica today and ask God to help her to, as he has these past four years, to face and deal with this new struggle. God is our fortress, our strength, his love endures and never fails! Pray a special prayer for her today and also pray for her fellow coma patient that is still here as well - Devon Emmanuel from Connecticut. Devon had a little mishap yesterday, as she apparently was sleeping in her bed and fell out of it onto the floor! I ran to the nurses station and I never saw them run so fast! She is allright now and didn't get seriously hurt, but she too has had to deal with her own set of struggles. So pray for these two young woman today!
"GOD IS OUR REFUGE AND STRENGTH, A VERY PRESENT HELP IN TROUBLE" Psalm 46:1
In God's love, always,
P.S. Our two favorite doctors are back from their trips - Dr. "Rainbow" and Dr. "Green Shirt" and we are so happy and also so comforted as well!
P.S. I gave Dr. Green Shirt (Cantu) a present that I made for him while he was gone. It is the first of its kind and it became my therapy while going thru these obstacles with Jessica to come up with the design and put it together. It is called:"Future Ketamine Coma Patient". It is a bear stuffed animal that I dressed up in a childrens hospital gown, applied tubing, medication bottle, and "ketamine" stickers to it --- everyone in the hospital that came into the room - loved it!! I have now been commissioned to make some more for the other doctors as well! For those of you who know me, you are not surprised that I have come up with this idea, but to those here, they feel I have found a lucrative business venture!( or maybe they think I'm a crazy americano) I guess, as a Mom that is here with her daughter, just as Cathy is here with hers, you have to find some outlet, something different to focus on besides the sickness, or you can go crazy some days!!! As soon as I can figure out how to put pictures on the blog - I will show you all "Future Ketamine Coma Patient Bear"!!!
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at 1:04 AM
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!