Hello to All,
This past week has been very difficult for Jessica. Initially it looked like the fevers were responding to the antibiotics, but the past few days the fevers have been increasing and last night it went up to 39 C or roughly 102.5 F.
Due to this Dr. Cantu and Dr. Dillman both agreed that it would be necessary to remove Jessica's medi-port and instead put in a central catheter. She was brought down to surgery this afternoon.
We are currently awaiting cultures to determine if this is the same infection she has been trying to fight or a new one.
She is a fighter and quite honestly I don't know how she manages to keep on fighting sometimes.....but we have to believe that God has a better plan for Jessica and also a better life ahead for her as well.
We thank you for all your love and support and continued prayers for Jessica.
Please pray that the RSD symptoms she is feeling will lessen. Pray for Dr. Cantu and all the doctors here at the Hospital San Jose Tec.
In God's Love, always,
Sarah Gina (Jessica's Mom)*
***To Post A Comment-CLICK on Comments Below***
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!
11 comments:
Colossians 1:9
9For this reason, since the day we heard about you, we have not stopped praying for you and asking God to fill you with the knowledge of his will through all spiritual wisdom and understanding.
sarah, thank you for continuing to update all of us. i'm sure it isn't easy to find the time or even the right words when things become challenging. you are an exceptional mother.
jessica, you can fight this infection. when i hear about your latest challenge, i can't help but think of how far you have come. this is just another hiccup on the road to recovery.
have you ever seen the movie finding nemo? i like to use the saying dore said over and over again when faced with opposition. she said, just keep swimming, just keep swimming. right now you may be treading water, but before you know it you'll be floating on a raft, enjoying a cocktail with an umbrealla. until you reach that point, just keep swimming, jessica.
you are in our prayers.
God bless you,
emily-your coma buddy
Hey, Gina and Jessica, keep hope in your hearts and I know Gods light will shine through. Prayers, prayers, prayers. We'll keep them coming!!!! hugs and kisses, Bonnie
We are continuing to pray for more miracles for your sweet Jessica!
With love & prayers,
The Turners
I know that God has big plans for your family and for Jessica. This is not an easy road for any of us but seems to be throwing curve balls at you over and over.
I thank God over and over for having gotten to know you and for the friendship we share.
It is in adversity that we often find our greatest gifts and strengths. God is going to use this for His glory, we just need to hold on for the ride and trust always in His love and mercy and wisdom.
My prayers continue even though I have been too sick to say much. i miss you and look forward to talking with you all when you can. Please give Jess a gentle kiss from me and tell her I hold her in prayer daily.
Be strong Sarah! I hold you up too! May God give you a hint one of these days and until then may we all be able to trust in His ways no matter where they seem to take us.
Do you remember the Psalm.. The Lord is my Shepherd....? I like the part where he takes us through the valley of the shadow of death and yet I will fear no evil. I am hanging on to that today for you and me.
All our love,
the Kwantes family
Sarah and Jessica,
Thanks for posting and letting us know how to continue to pray for you both.
As always prayers continue for you to find a healthy body.
love from Saratoga
Linda
Dearest Jessica and Gina, The strength, perseverance and determination that you have built up over the past few years is critical these days to help you hang in there. I love Emily's reference to Finding Nemo and just keep swimming. By having made it through so many difficult times, you can have confidence that you can do it again, and again, as many times as you need to on your journey to wellness. I am keeping you in my prayers daily and am with you in spirit. Love always, Angel xoxoxoxoxoxo
If you need anything from the states, please ask. I am only an email away.
Gloria in Magnolia, TX
With love prayers and big/little hugs,
Always Nancy and Joe
Hi Jessica, and your Mum Sarah!
I have just been reading your blog and wathed the CNN report. I wish you all the best. I am Emma Orange's sister, and your story has touched me. You are such a strong person to go through the incredible amount of pain you have to live with. Soon you will be able to met my sister.
I hope you you will one day soon be pain free. All the best and never give up hope.
From Aleishia Orange
Post a Comment