Hi to all,
Jessica's fever has finally broken and she continues antibiotic treatment for her infection. One of her doctors, Dr. Eva Trujillo, has been brought on to try and rehabilitate Jessica's intestinal system in order to improve her nutritional status and thereby try to boost her overall immune status, which is necessary for Jessica's overall well-being. She is a welcome addition to the team and very knowledgeable as well.
Yesterday Jessica received her first ketamine booster after the initial coma. Most RSD patients who undergo the ketamine coma will require boosters of ketamine. How many boosters will be required depends on the individual cases. Dr. Cantu doesn't know how many Jessica will require, but I think she is going to need alot due to the severity of her case! You see, in analyzing how Jessica's case is different from the other cases that have been here undergoing the coma treatment, Jessica's RSD was triggered by an infection -lyme disease and not by an injury or accident, as in the other cases. The boosters take about 2 - 3 hours to infuse and afterwards you can experience some of the same side effects you had during and post-coma, only to a lesser degree. As Jessica continues to take the small steps needed to try and regain her life, I am in awe of her incredible spirit and determination. Her struggle is a daily one. I don't know if I could endure what she has had to! I pray that God will make these days, weeks, and months ahead easier than the past 3 1/2 years have been!
Also, today our dear friend Nancy leaves to go back home to Joe and Tinker in Marco Island, Florida. She has been such a tremendous help to Jessica and I and we will miss her terribly. It takes a special person to do what she has done for us and we will never forget that. She, just like Nita, who helped us before, will always have a special place in our hearts! For now, Jessica and I will be alone until my brother Vinnie receives his passport and comes to help us! Interesting enough, today is Mexican Independence Day or "El Grito", the Cry of Independence, for when Mexico received independence from Spanish rule. It is a holiday similar to the Fourth of July in the USA and everyone celebrates with parades, flags, decorations, and fireworks. And, on this day, Sept. 16th, I too, gain my independence for a while until my next helper - Vinnie - arrives! Viva, Mexico!
In God's love,
always,
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!
9 comments:
GOD IS BIG and we know he is in control. May he continue to keep you and Jessica in His grip....We're praying for you and so are many others...and we know He hears the prayers of His people.
Love & Blessings always.
John, Angela & the boys
Stay Strong, Jess! Crystal Ulmer
when you are tired just rest. Although we are not there physically you are not alone. The Lord will carry you along the way.
love from Saratoga,
Linda
Dear Sara and Jessica
Although we aRE NOT pHYSICALLY WItH yoU in Mexico..... our hearts are. You are both the strongest and most courageous people I know. I pray each day that you will be home soon. Love you..your sister Carol
Dear Sarah, Remember all the 4th.July parties at my house in N.J. they were so much fun with all the family and friends. Brings back such great memories try to go back and recall all the laughter we had especially with Charlie, who is watching over you and Jessica along with Dad too.Have fun in your dreams tonight and awake refreshed with laughter and happiness.Love your BRO VINNIE
I'm praying for a quick recovery for Jessica and a long life filled with happiness and free from pain.
So happy to check back in and see that Jessica's fever broke. Praise be to God!
We continue praying that her treatments will go well and God will watch over your sweet precious daughter each and every step of the way.
May you get rest this week and sleep well.
God bless your whole family and watch over all of you.
Elizabeth in Chico, CA
thank God Jessica is over the fever I will continue to keep her in my prayers. Jacquie
Sending my prayers and healing energy to Jessica and the family. I hope that the therapy proves to result in much progress and movement forward for her.
It is a very interesting approach and I can see how it would very much work on this disease.
GOD BLESS Always
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