Hello to All,
I am writing this blog tonight from the Hospital San Jose Tec once again.
Dr. Cantu & Dr. Dillman both felt that it was necessary to hospitalize Jessica due to infection and also because of her blood counts being low. Due to her immune system being compromised and the lesions returning to her right arm and also the increasing pain she was experiencing - it was not only necessary but unavoidable.
We arrived here via ambulance and are back in our old room - #845.
As you can imagine coming back to the hospital comes with many mixed emotions. On the one hand, it was necessary and in Jessica's best interest so that she could get all of the treatments necessary. On the other hand, it is so very emotional and for Jessica - a setback. She is such a strong person and as Dr.Cantu has said to her so many times during this journey - he is amazed at what she has endured and the obstacles she has overcome and still continues to overcome each and every day. God is truly with her and continues to bless her with a perseverance that quite frankly is inspiring. I am truly blessed to be her Mom!!!
She is currently on equalta, maxipime, and cubicin. These medications may change when the culture sensitivities are in. She will also be receiving her ketamine boosters in order to try to alleviate her pain and also to go after the reoccuring lesions. Blood counts will be drawn daily and appropriate treatment will be started as warranted. It is the doctors hope that we will only be in the hospital for @ 10 days.
Please keep all those prayers coming for Jessica. God is good and with His mighty help and unending love - as well as Dr.Cantu and his amazing devotion to Jessica - and to Dr. Dillman, her infectious disease doctor and his tireless efforts as well - and also Dr. Luigi and all of his help --- I know that Jessica will come out of this victorius! For me, as her Mom, I will stop at nothing to see this happen for Jessica and for her to one day have her life back again...........
May God keep you all healthy and in His loving grace,
Sarah Gina (Mom to 3)*
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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!
7 comments:
Sorry to hear Jessica had to go back to the hospital. We hope and pray that the doctors are right and it will only be a brief stay.
May God give you both the strength to carry on, may you feel His peace and comfort as He carries you through.
With love & prayers,
The Turners
Dearest Jessica and Gina, You are in my prayers every day, as well as your whole family. Although it must have been difficult to go back into the hospital,it is a comfort to know that Dr. Cantu and the staff are there and are uniquely well equipped to care for Jess and to meet her needs. May God continue to surround you with His grace and healing light, and may this hospital stay be brief and gentle. Hang in there! Love always, Angel xoxoxoxoxoxoxo
Your are all in our prayers. Cousin Adrienne & Vinnie
So sorry to hear this news.However always inspired by you & Jessica's determination,strength & amazing faith.Will always keep you in my thoughts & prayers.
Jodi
Hi Ladies! Just another step along the journey to wellness! Stay strong Sweet Jessica. How blessed Jessica is to have YOU for a Mom... Sarah Gina!
Much love and neverending prayers!
XOXO Nancy and Joe
I'm so glad you were still near the hospital when this occurred and hope that it will be just a small setback like everyone's instincts are telling them. You could come out the other side with an even stronger core of healing --God can be surprising like that!
I have been in a thankful period lately for my medical team and this seems to be a theme also with you and your Mom. God has made me aware of how many suffer with this disease without knowledgeable caregivers or even family members who understand them or believe their pain is real.
It is amazing how Jessica already brings hope to people and I my desire is to do the same. May the knowledge of the spiritual lift that you give to others help you over this tough spot and seeming setback.
And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28 NIV
With friendship, Linda P
West Lafayette, Indiana
Oh dear.
we have had our own crosses to bear here in Saratoga. Roger's mom had been admitted to hospital and they said she needed 2 pints of blood. After a month they told us that again she needed another 2 pts. not a good sign. Then she came home and she was not good. and today after almost a week she is finally bouncing back. I hope that you have the same experience. But again I pray that we will find some caregivers, one moved to florida. So we, like you, pray that the Lord will answer all our prayers and send us good health and let us know how to do God's Will.
Sorry i haven't written but along with all these other trials the comuter decided to play "stupid".
Prayers
Linda in Saratoga.
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