Hi to all,
It has been a very long night in Monterrey and in Room #844. Tonight, as in many other nights, sleep was just a five-letter word and no where in sight! One of the most essential things of life - sleep - you come to realize, is one of the things you need the most, but yet somehow you find a way and manage to do without. Jessica has had a hard time getting any type of sleep. The doctors have tried many different type of medications, but this too can be one of the adverse side effects of ketamine and also RSD. Sleep is also so important for the human body, in that it helps to restore the body back to good health. As her Mom, if she doesn't sleep than neither do I. We both ask for your continued prayers for sleep - something that is so needed, yet so hard to obtain!
P.S. Nancy was successful in retrieving the package from customs. They finally allowed the medical bandages needed for Jessica. This was after four hours of being there with Omar, the taxi-cab driver who speaks english and was so helpful; and only after ultimately having to cry and plead her case! They would not allow the plastic syringes or the green tea packets for my water, but interestingly enough, they allowed a stuffed animal bear sent by her sisters (this could have contained anything?)
P.S.S. Jessica's doctor - Dr. Cantu - returns today after being away for 3 days. Jessica hopes that he brings back her "full" memory with him from vacation! I certainly hope so too!!!!!!!
With love,
from a very tired 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!
14 comments:
Mrs. Stevens,
Is Jessica still moving her legs? How is her pain? I pray that you and Jessica will gets lots of uninterrrupted rest:) Crystal Ulmer
if only I could sing a lullaby that your heart could hear dear Jessica and dear Gina, but I sing as loud as I can for both of you with love, Bonnie
HI Gina. Danny from Colombia.
Praying for you and Jess,
for how long will you stay in Monterrey?
i hope you get some rest trhrouh the day..!
Hi Mrs Stevens and Jessica,
Gosh, I remember how hard it was to be so sleep deprieved. I don't think people fully understand how valuable and important sleep really is. I remember people telling me that sleep would be difficult after the coma, but since I was only sleeping an hour to three a night (on a good night) I couldn't quite imagine it being more difficult. Well, somehow, (and I still don't completely understand how) it was. I remember the one night all I wanted in all the world was to sleep. I will be praying Jessica can sleep. Yes, we had those nights and you are right, if I didn't sleep, neither did my Mom. I so appreciated her love and commitment to me and she helped me through those times as I know you are doing for Jessica. God Bless you. I am sure as a Mom you want to be able to do more, to make things better, but your help is more valuable than you probably know. I continue to understand that more and more on a daily basis how MUCH Mom did for me during those times. Actually, Mom and I had that conversation today.
We love you both and are praying for SLEEP! One thing a doctor that I had said that did eventually help me, but it certainly was not a quick fix, was at around the time I want to fall asleep (somewhat of a "normal" bedtime (For me that was anywhere from 12 to 2 at the time) she said turn out the lights, turn off the TV and I turned on my Christian music. Close your eyes and kind of picture your mind blank, picturing white. In the beginning this did nothing and after a half and hour to an hour I would turn the TV back on if I couldn't sleep, but the problem is right now, I don't think Jessica's brain knows HOW to sleep. Mine didn't. What your trying to tell it, is "This is bedtime, this is the time we go to sleep, everything stops and rests." It takes a quite a bit of time for your brain to "learn " how to do this, but it definitely helped. Sometimes too, if you can do this in conjunction with the sleeping meds, get the meds and then impliment this, the meds help the process. It definitely did not work at first, but I continued with it and now I can sleep as many hours as I want. You'll get there Jess, hang in there. I KNOW this is brutal right now, but you'll do it. I know you will.
Love in Christ,
Lindsay Spengler
Gina and Jessica.
Hope tonight is better. In darkness and quiet with only someone (taped)who suggest cleansing breaths can help the body relax and destress and fall asleep.
Maybe the way we used to put the babies to sleep. A soft lullaby and the slight touch on the forehead or back.
I always sing "you are my sunshine" to my kids and now my grandkids.
love from Saratoga,
Linda
Dear Sara... I am so sorry that you both are struggling right now. You are right, sleep is so important. I am hoping that in the days ahead Jessica will finally get some rest. Whenever she rests please try to get some rest yourself. Love you and miss you terribly. Your sister.. Carol
You & Jessica have my thoughts & prayers with you fully!!
You (mom) also have my empathy on being sleep deprived, not a great place to be. But soon you will be able to catch up on all you missed!!
~Many Blessings~
Coach Marla
Gina & Jessica,
I'm hoping you have a better night tonight. Always in our thoughts and prayers. May God continue to give you strength.
Marianne
I have been following Jessica's blogspot since the beginning and with all my heart wish that both of you can have a normal life again. I know you will get there.. I do wish to help if still needed. I am wondering how Jessica's pain and extremeties are. Is she moving, sitting, and eating yet,
Dearest Jessica and Gina, You are in my prayers every day and all the time. I prayed for sleep for you today. I remember those days when the kids were babies and sleep seemed like a rare and precious treasure! I pray that things get easier for you soon. So many people are praying for you and sending their love to you. I wish we could also send you some sleep! Hang in there! Love always, Angel
Jessica and Sarah Gina,
We say prayers for you both several times a day. We pray for your health and that God will restore your strength and vitality. We also pray for relaxing, restorative sleep for all of you. We know God answers prayer and that He is listening. God bless you both and Nancy, for being so persistent in getting those essential bandages to you.
God Bless You,
Joanne
Sleep....rest....and healing....
We're praying for you....
God Bless you both as well as Nancy, your new angel.
In His grip,
Love
John, Angela & the boys
Hi, Jessica. It's Emily and I'm home now in California. One of my daughter Madison's favorite movies, is the Wizard of Oz. Dorothy had it right when she said, "There's no place like home!"
Congrats to Nancy for getting the bandages! I hear you've got an ICU bed now. I hope that prevents the ulcers along with the bandages.
Are you still wiggling those toes? I'm sure it will be good to see Dr. Cantu again after his little vacation. And let's be completely honest, Jess, he's not all that hard to look at?! I remember him smelling good, too. I've always had hyper-sensitive olfactory senses, though.
Jessica, I know that the will of God will never take you where the grace of God will not protect you. I pray for sleep for you and your mother, strength to continue to fight the RSD and peace in knowing that someday soon your nightmare of a story will be a success and you will stand and walk as a testament to His amazing works.
Love and blessings,
Emily Wilford
Aunt Ducci,
You are so strong!!!! we have been following your blog everyday and keeping jessica in our prayers....we love you guys so much!!!
Joe, Jen, lexi, Adriana & Joey
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