Hi to Everyone,
To view Jessica on Fox TV, Click on Link Below:
http://www.youtube.com/watch?v=PW_vstm0bS8
Sorry it has taken me so long to write about what has happened these past days.
Jessica left the hospital last Saturday at around 6:00 PM. She was brought to the apartment via ambulance and stretcher. Dr. Cantu instructed the paramedics to proceed very slowly and gave them explicit instructions on how to manage Jessica during the trip. He also gave her ketamine to ease the transition from hospital to "home". The ride would normally take only 5 minutes, but because of the special precautions, it took us 45 minutes.
The first thing Jessica noticed as she was wheeled out on the stretcher, was how warm it felt outside and how windy it was. You can imagine, this was her first breath of fresh air in 10 months!
When we arrived at the apartment Jessica was still under the effects of the ketamine. She later told me that I had done a great job and that the apartment was beautiful. We were helped to the apartment by Dr. Rainbow and her husband Dr. Zavala. We were also visited by Pastor Long and his wife Sue, Sylvia and her daughter Christine and her friend Fran. They brought along a dessert & fruit basket, and also special blessings for our "home away from home". Our new friend Lalio Chandler, also stopped by with special well wishes for us as well!
From Jessica's room she can see the majestic mountains called "La Sierra de La Silla" because of how the central portion of the mountain range resembles a chair or "silla". At night, when the city of Monterrey is all lit up, it truly takes your breath away! I got to sleep in a bed for the first time in 10 months --- it seemed very big to me, as I had gotten "used to"sleeping on the sofa.
Jessica is currently on a special hospital bed that was lent to us by another new friend and fellow RSD sufferer - Olga. Her husband and friend Blanca delivered it personally to Jessica at the apartment.
We truly have some much to be thankful for! God is good!
These past few days have not been without struggles. As much as it is a major milestone for Jessica, it is also a very big change and one that she, as well as I, have been trying to get used to. When you have spent 10 months in a hospital, it stands to reason that the adjustment to "outside life" would not come smoothly. As with everything else in life, it will take some time.
Dr. Cantu has been wonderful, as always, in helping Jessica with this transition. I think that he is just as amazed as we are that it actually happened at all and that we are finally out of the hospital. Quite honestly, I think he is finally breathing a huge sigh of relief!!!
I will try to write some more in the coming days, as so much as happened.
For now it is late and I am feeling emotionally and physically exhausted, and besides, my "big new bed" awaits me!
Please pray for Jessica to continue to have the strength and perseverance she needs to navigate the next few weeks. Please pray for the continuing treatments to go well and for the "small steps" to continue and that ultimately all that was accomplished here in Monterrey will one day eventually bring us home again!
We pray for ALL of you and are forever grateful for all of your love and support!
In God's Love, always,
Sarah Gina & Jessica*
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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!
13 comments:
Dear Gina and Jessica, May your move to your new "home" be blessed with good and improving health. Enjoy sleeping in a bed. Our prayers are always with you.
Love, Charlene
We are so excited for your new piece of your journey! May each day bring relief, healing and more beautiful memories of a beautiful place ...for heaing.
Sleep well sweet NurseSarahGina!
Very relieved to hear from you.I may not write very often but you still remain in my prayers always!
You are both such strong & amazing women whom I admire greatly.
Peace & good health to you both.
Jodi
Dear Gina and Jessica,
I am so glad you have made the transition. I read your blog ALL the time and ask Dave for updates. We are thinking of you guys. The GCFD Fire Department family is keeping a good eye out on Dave too ! Best wishes...
Lenny
The view sounds breath taking! Maybe one day, you will be able to go back and walk up that mountain. With God, all things are possible!
Enjoy the new bed and your new home.
We will continue to pray for you all!
With love & prayers,
The Turners
You have so many blessings to count. I can only hope and pray that Jessica adjusts tot he new bed very soon and that she is able to enjoy the time in the new place. How much bigger it must all seem and a bit overwhelming!
See you soon
you all have been through sooo much!!! I should never complain!!!!! you inspire me to be thankful in all things and that family and health should never be a given.it is truely a gift. i love how your faith has grown,cant wait till you all are together again in florida.
Jessica and Gina, I'm so happy to hear you are out of the hospital. You are always in my thoughts and prayers. May each day be a step closer to the life you are so deserving of.
Jessica and Sarah Gina,
I remember the view of the mountain. I am so happy that it is just outside the window now. Find strength in it's beauty. I wish I was there to hold you both. Together you truly represent strength, hope, faith and love - in the flesh. I love you both and will never stop thanking God for all He has done and continues to do. The prayers will never stop. Hugs. Nita
Dearest Jessica and Gina, What a great day!! I am so thrilled for you!! Breathing in fresh air alone must have lifted Jess's spirits!! I hope that you are both settling into your new place without too many "adventures"! The faith and trust in God that you have so strongly in your hearts will continue to serve you well on this next step of the journey. We are all with you in our thoughts and prayers every day. Keep on hanging in there!!!!!!!!!! Love always, Angel xoxoxoxoxoxoxoxo
A new chapter in the book of Jessica. How exciting!
I have been away from the computer because I went to NJ to see my 50 year old sister that has adopted two twin girls, premies. One is still in the hospital in the neo natal unit, the bigger sister was able to come home last week. They were born May 14(due date July 1).
they are beautiful little fair skinned Irish girls named Leah Ann, Ann is from my sister who died, and Erin Jane. The hospital visit made me think of you and all the wires and hand washing etc.
Now I am sitting here while Roger is at the hospital. His 94 year old mother was taken to hospital by ambulance- I think it is a small issue but she is too frail to move by ourselves.
So my prayers are for the Stevens family, The Swanson twins (that they may learn to suck, swallow breath-can't get out of hosp til she does that)and my family to get through these days.
Peace and love
Saratoga Linda
I feel so ecstatic for you. I can't wait till you are well enough to dig into those medical books.
Lyme patients everywhere need a fighter like you Jessica. I know you will get there. Keep fighting.
Dear Gina & Jessica,
Glad to hear you are out of the hospital! You are so strong. You are always in our prayers. We hope you continue to get better. You deserve the best...
Love, The Kiely's
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