Tuesday, October 4, 2011

Exit plan delayed...

I am sorry for the delay in this update, but these past few weeks have been so crazy! My family- both here in Mexico and back in Florida, have been getting everything ready for my homecoming.

My incredible dad and uncle Vinnie oversaw a large construction project in our home and once it was complete, my amazing aunt Carol decorated the room and bathroom for me. Everything on their side is ready!

On this end we were busy packing up the apartment (which as you can imagine after 2 years here—is a huge undertaking!), and saying our good-byes to the people who have become my second Mexican family.

Last week my mom spent 3 hours on the phone with various airlines going over my special medical circumstances. The flights were booked—for today, October 4th. Leaving Monterrey at 12pm.

We called everyone in our family and told them we would be coming home next week! Everyone was ecstatic, but my 88 year old Nanny was definitely the happiest of all! She screamed and laughed saying repeatedly, “My prayers have been answered!!!… My prayers have been answered!!!” It was so cute!

Anyway, on that same afternoon at 4pm I was scheduled to go for some final tests that needed to be done before I could leave.

I was very excited and kept telling everyone there that these were my “last Mexican medical tests”…

…Or not.

One of the tests I had is a Densitometry scan that checks your bone density. My results were not good at all. My scores show the highest fracture risk possible in both my spine and hips. It’s a miracle that I haven’t broken several bones already. We were told I will need to go back in the hospital and have some different types of treatment before it will be safe for me to travel.

Wow. Talk about a quick change of plans.

Needless to say, we were pretty bummed. We had to call back everyone in our family (not even 4 hours later!) and tell them this news—our exit plan has been delayed.

We expected everyone would be upset, like us, and they were… especially little Michelle. But once again, my Nanny’s response was the best and caught me totally off guard. “Its ok!" She said, "Honey, you have been sick for nearly 6 years… if you need to wait 6 more weeks, or however long, you just wait. My prayer HAS been answered- You are better!! Keep trusting in God, because he knows the right timing. You do not.”

Wow. I guess with age comes great wisdom.

For the past 2 years on my wall in my room I have this verse in both english and spanish-

Proverbs 3:5-6- “Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.”

To be honest, I never really paid much attention to what the next part of that verse was though, until now…

Proverbs 3:7-8-“…Don’t be impressed with your own wisdom. Instead, fear the Lord and turn away from evil. ….Then you will have healing for your body and strength for your bones.

Trust, healing and strength... Those are promises I can count on!

Thanks again everyone, for all of your continued support. My hope and prayer is to get to be home before Thanksgiving to celebrate with my family. Thank you for keeping my family and I in your prayers!

In God’s love, Jessica

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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 ill

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 painful skin lesions

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.

Jessica, age 15, at summer camp

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.

July 2003, Jessica's Lyme disease rash

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.

Jessica getting into the air-ambulance to go see Dr. Kirkpatrick

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!