Hi to all,
Yesterday at 4:00 PM Jessica left the ICU after being there for 10 days, and I am very happy about that! Being in the ICU is difficult and surreal, from the different levels of sickness that people have to endure and for some sadness, when they see their loved one pass on to heaven. The other day a very important person passed away in the ICU. Apparently he was the top Professor of the medical college and was a "dignitary" and very well known and respected here in Monterrey! I can't tell you how spiritual and family-oriented the mexican people are. Within 15 minutes there was a swarm of family and friends who came to support the grieving widow and her family. I was truly impressed!
Also, special thanks to "Alvaro" who I met in the waiting area of the ICU. He was visiting his family member and became very interested in Jessica's case. One day he gave me apples grown especially in his hometown of Saltillo - they were delicious! The next day he brought a present for Jessica - a beautiful gold-plated ornament for her room with the image of the Virgin of Guadalupe on it! ( She is the patron saint of Mexico) I was so touched by this I gave him a kiss!
About Jessica - she is still having some difficult days in that her brain is still "re-setting" and her nervous system is still trying to readjust itself. Apparently, the ketamine is an amazing drug in that all of her lesions (over 100 of them) are almost gone and fading! She is weak, tired, at times confused, but as her body readjusts and as time goes on, the doctors have said we will continue to see improvement. We don't have a time frame for this, as each patient is different, but Jessica and I will be here for as long as it takes! Keep her in your prayers as the road ahead will take all the strength she can muster. We are grateful that Nancy is here to help us and she will be posting her blog tomorrow. We pray for all of you to be well!
Till tomorrow,
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!
6 comments:
Dear Jessica and Gina,
I send love and prayers.
Rome wasn't built in a day.
Noah's ark took quite some time.
Our Lord's journey on earth and His time between the Resurrection and the Ascension. I will continue for strength. I know you are both tired but remember how tired Moses was in the boat among the slaves saying that he didn't come this far to give up.
I know our prayers will give you strength and the Blessed Mother will be at your side.
love from Saratoga
Linda
Gina and Jessica. our prayers are with you on the bumpy road ahead. Trust in the lord and he will guide you through. Love from Bonnie and family.
Jessica and Gina....still praying daily.....and I will not stop!
Jessica and Gina....you are in our thoughts and prayers...Miracles take time! Stay positive!! Thank you for the updates Gina. Love, Marianne & Rob
Jessica and Gina,
Getting out of the ICU is the first step of many good things ahead. May you settle into a more peaceful routine and may the days ahead be filled with good things. The road may be rough at times but keep the faith and fight the fight. It may be baby steps, but they WILL BE steps in the right direction. Enjoy your daily victories even if they seem small, YOU DERSERVE THEM!
Thank you for sharing your amazing journey. We think of you and pray for you more than you know.
With love,
The Pratts
I am so happy to hear that she has been downgraded from ICU! I will continue to pary for you and Jessica for the recovery ahead :) Crystal Ulmer
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