Hi everyone,
Just a quick note:
Jessica received a booster yesterday to help with her increasing pain. She was able to actually get 1 hour of "rest" afterwards, but this morning we had a major problem with her ICU bed in that the alarms went off (Loud sounds-not good with her noise sensitivity) and with that the air system shut down! She is currently being sucked into the bed - please pray - as we are awaiting a new ICU bed as we speak!
Just another day in the Hospital San Jose!
Pray for Fern - she had a booster at the same time as Jessica. Pray that she receives the pain relief she needs.
Pray for Elena - she is coming out of the coma today. May Lance and Abby have the strength needed these next few days.
Thankful to God today for a "normal" problem --- a deflating bed --- nice to know that the world is still "normal" and that some things in life ARE immediately fixable.
Till tomorrow.....
Sarah Gina (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!
10 comments:
Hi Sarah Gina and Jessica
I do hope that they are able to work out the bed problem and that you are able to begin taking food by mouth.
Last night was the auction at church and it was a huge success. So many people turned out to support The Life and Jessica's Journey. We prayed for you in Mexico and I know all those there last night will continue praying.
I was able to speak to your husband and it was an absolute pleasure to meet Michelle. I remember her from when she was a little girl.
I will pray for all those afflicted with RSD and Lymes DIsease and keep holding on to faith that the boosters continue to help.
God Bless,
Jenn
being sucked into the bed??! wow, well thats certainly a different problem than the usuals haha..well atleast it is fixable!
i love you both very much, mom ill skype you tomarrow!!
Never a dull moment!
One hour of rest I bet felt good! We will pray Jessica will get many more!
We pray this new bed will be more comfortable!
With love & prayers,
The Turners
Hi Jessica,
I remember the question, "Why?" I must have asked my Mom that same question a thousand times. Each time she would tell me the same thing. "Honey, I don't know but one thing I know for sure, God will not waste this." When I look back I remember, it never seemed like the answer I was looking for. I always wanted something "real" to hang on to. Something that gave a reason for all of this suffering. Something that showed me this was not going to be a waste. Something to show me this now. Not later, not eventually, but right now.
I didn't get those answers for ten years. But let me tell you, more and more of them come flooding in each day. I wish I could tell you exactly why, something that gives you a reason to hold on today, right now. The only thing I got is this: He will not waste this. Like I said, I wish I had more. For whatever reason the Lord has in this, whatever the purpose, take comfort in knowing, that HE DOES SEE. Though we may not, he is weaving together the ultimate purpose. A heavenly purpose. Something that will never fade, for all of eternity.
Praying you find peace in that purpose today.
In His Love,
Lindsay Spengler
Hi Jessica and Gina,
Certainly hoped that the bed arrived and Jessica is resting more comfortably.
I also went to the Auction at the church on Friday and spoke with David for a bit. It was a fun evening out for 2 great causes! My Friday nights usually consist of eating left-overs for dinner and watching mindless TV while de-stressing from my work week. I usually fall asleep by 9, but this Friday evening I was out til 11, seeing old friends and attending an auction which I have never done before.
Praying for you and Jessica and all the others who are suffering with this debillitating disease. Off to church. Wishing you a day that brings some peace and rest.
God's blessings to you both!
Madelon
Good Morning Sleeping Beauty! One hour is just the start of two and then three and back on the road to recovery. I remember how hard you had to fight to get that bed and I pray this one was easier!
I'm go glad they took that tube out so you can mend faster and feel better and have better days ahead.
Off to church, praying for all the ladies of the Monterrey KComaBooster Club!
XOXO Nancy
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