Hi to all,
We thank you all for your thoughts and prayers and for all of your concerns regarding how Jessica is currently doing. I thought I would share some answers to some of the questions I have been receiving. Here goes:
1) Does she have her memory back yet? No. The past few days she has retrieved the basic knowledge of who she is, who I am, and her family, but it doesn't last long. As Jessica says, she goes into the "black hole" where I guess her "new" brain is trying to process all the information that it contains. The doctors have said it will come fully back soon. Today can't be soon enough though!
2) Does she still have noise and light sensitivity? Yes. Apparently, if you go into the coma with this as a problem, it can become more heightened with the ketamine. The doctors are having us remove the sunglasses and noise-cancelling headphones 3X a day and increasing it by 1 minute each day.
3) Does she have pain? Yes. But remember, all patients emerge from the coma with pain. It is the one question as they emerge from the coma that you want to ask, but the one question you can't. You see, the brain has to now differentiate between pain that existed before and what may be "normal" pain associated with the movements that the body made during the coma. In Jessica's case, it is further complicated by the fact that she still does not have her full memory back and so we can't compare what she is feeling now and what she felt before! From what we are told by previous coma patients and their families, this is the hardest part for the patient. Also, she is probably the most debilitated case of RSD they have seen, so her recovery is going to take longer.
4) Can she move her legs? This is probably the hardest question to answer as it is the most difficult. As you know, when Jessica was emerging from the coma she moved her legs. At that point she was still under the effects of ketamine and proporfol. For me, it was a sight that I will never forget and one that I know, with the certainty of God's awesome might, Jessica and I will see again!!! - I believe it was God opening a tiny window into what will be one day- that is our prayer and the hope that we have as a family!!! Jessica moves her toes everyday for the doctors!
5) Can she eat? This is a slow process and one that is evolving day by day. The doctors start with baby food and try to work up from there. Jessica enjoys the ice pops that I put into the freezer that I brought from home and hopefully one day soon she will be able to enjoy all the things she hasn't been able to in the past 2 years!
6) How long will we be here? That is another question that is difficult to answer, but let me say just this: Jessica and I and our family have been living day by day for the past 3 1/2 years. We will continue to do so. Jessica and I are here for as long as it takes to get Jessica back to a more meaningful, functional state of life!!! She deserves it more than anyone I know! We are in Mexico for as long as the doctors feel they can continue to help us achieve this goal!
Well, I hope that this helps to answer some of the questions that I have been receiving by your comments and calls. You are all our family and friends and so we thought it only right to answer some of them.
I am so very proud of my daughter Jessica. She continues to amaze me everyday in what she endures on this quest, her journey, to becoming well again and living pain-free. God truly blessed me 21 years ago, when he gently put my sweet little Jessica in my arms, and he entrusted her in mine and her fathers care. I want to make God proud by being the best mom that I can be and ultimately bringing Jessica back to the USA, to that brick house she calls home..............
Keep praying and may God bless you all,
***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!
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.
The 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 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.
Four 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.
If it wasn’t for her doctor, Dr. Liegner, and his expertise with complex cases of Lyme, and his determination to try any means in getting her well, by getting a “team” of doctors on her case, we wouldn’t be here today, still fighting. We owe him a deep sense of gratitude for all he does for Jessica!
During 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.
Upon 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!