Monday, April 12, 2010

Be Strong & Courageous...

Hola From Monterrey,

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As you know, Jessica had a procedure done the day before Dr. Patch Adams arrived. Our beloved Dr. Cantu decided to try a nerve block with an in-dwelling catheter in the right leg. For those first 24 hours it seemed like a miracle, for the pain that she was experiencing in that part of her body was almost gone. All she said she could "feel" was a very heavy leg that felt like it was in a numb tingly sleep. Sort of like how your lip feels during a dental procedure but only on a larger scale. Jessica was so "happy" and it was so evident in her face (she smiled & laughed) and even when she was brought back into her room after the procedure, she was asking to call Dr. Cantu and Dr. Luigi to tell them that the nerve block worked! It was an amazing day that was then followed by another amazing event - the visit of Dr. Patch Adams.

Unfortunately, it was not long lasting and for the past few days we have been dealing with the pain returning to the leg. Dr. Cantu has tried increasing the anesthetics that are continuously going into the catheter and also direct boluses into the catheter, but they are only temporary in giving relief. So today the plan is to remove the catheter, as it can only stay in for 3-5 days, and see what Plan B is. Please pray for Jessica as she is "discouraged". Please pray for Dr. Cantu as he formulates another strategy. Please pray for all patients who suffer with this type of pain - RSD/CRPS.

As her Mom and caregiver, I will say that I have seen a lot since I have been here in the Hospital San Jose Tec. I have seen many patients come and go and return for their boosters. I have "experienced" what they have to face and endure each day. It is not easy. In fact, no one should have to face this. But, they all find a way, somehow, to persevere. They find this "inner strength" and with the pure grace of God and the compassion and wisdom of Dr. Cantu, they forge on, and they take those "small steps"..............

With God's Love,
Sarah Gina (Jessica's Mom)*

"Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do, and He will direct your paths.
Proverbs 35:6
"You are my hiding place; you will protect me from trouble and surround me with songs of deliverance.
Psalm 32:7
Be strong and courageous.
Deuteronomy 31:6

***To Post A Comment, CLICK on Comments Below***


Anonymous said...

We will keep praying for you and your family and all who suffer from RSD/CRPS!

With love & prayers,
The Turners

Ashley said...

I am always praying for you Jess and I know that you are going to do great. Stay strong and keep taking those small steps. I'm so proud of you!!! I love you sooooo much.


Anonymous said...

Oh Jess don't give up. I know exactly how you feel. The blocks didn't last very long for me either and I'm still paying for them six months later! I will never regret trying them though because I'm not going to give up either.

When I had my ketamine every day for ten days I got some real relief; like your Mom was saying about you and the block, I was smiling and couldn't believe the pain was so diminished. My family kept looking at me when they didn't think I saw them and they were so happy too but afraid to "break the spell" by saying anything.

When the every day treatment stopped and I went to boosters, I really grieved the loss of that higher level of relief. I'm grateful for what I have now but it's not like that magic time. But I have to believe that it wasn't God's will for me to trade so much of EVERY day for the ketamine treatments. That He has something else in mind for me that is so much better and that I can trust Him. And I praise Him that the boosters are still working enough to keep me going.

One of my on-line support group friends was having a bad day and I just had to tell her about you and your Mom. Once she read your blog I said, "Now you see why I can't give up, not while Jessica and Sarah Gina are still fighting." I think it made her want to keep trying too.

Maybe that's part of God's will for us in our weaknesses and setbacks, is that we learn how to encourage one another in ways that we never could if we had not been there ourselves.

Hoping for ten victories for you for each setback..
Linda Pedigo
West Lafayette, IN

Anonymous said...

Dearest Jessica and Gina, I loved Linda's post above. It is so true! When I was having a really tough time last year, and some days were just so hard, I would think "If Jessica can make it through the day, so can I." Jess, as you continue to forge ahead on your journey with persistence and determination, you bring untold others with you. In a very real way, even in your hospital bed, you are a "leader" for us all!! We are "following" your example! And, when you become Dr. Jessica, you will be able to listen to your patients with total understanding, look at them with those beautiful loving eyes, and say, "I believe you. I know what it's like, I've been there. I will be happy to help you." You are a blessing in people's lives. Hang in there, ladies. You are surrounded by unceasing prayer and loving thoughts. Love always, Angel xoxoxoxoxo

Nancy said...

Keep the faith sweet Jessica. What wonderful comments from your friends daily how you are helping them and I know they are helping you too. You have helped me in so many ways Dr. Jessica and nurse Sarah Gina!

My prayer also is relief from the pain and continued steps towards total wellness.

You are in so many hearts and prayers and we will fight and win together to bring you peace!!

XOXO kisses to our Dear Dr Cantu too

John and Rosemary said...

Dear Jessica,
I am sorry that the positive effects of the block was so short lived.
You know that Dr.Cantu is always searching for a plan to help you.
Try to take things in small increments... moment to moment, minute to minute.
We care about you and we are praying for you.

John & Rosemary

Anonymous said...

God Will Make A Way
Words and music by Don Moen

Proverbs 3:6
"In all thy ways acknowledge him, and he shall direct thy paths. "

God will make a way,
Where there seems to be no way
He works in ways we cannot see
He will make a way for me
He will be my guide
Hold me closely to His side
With love and strength for each new day
He will make a way, He will make a way.
By a roadway in the wilderness, He'll lead me
And rivers in the desert will I see
Heaven and earth will fade
But His Word will still remain
He will do something new today.

God will make a way,
Where there seems to be no way
He works in ways we cannot see
He will make a way for me
He will be my guide
Hold me closely to His side
With love and strength for each new day
He will make a way, He will make a way

Anonymous said...

Psalm 107

6Then they cried out to the LORD in their trouble, and he delivered them from their distress.

19Then they cried to the LORD in their trouble, and he saved them from their distress.
20He sent forth his word and healed them; he rescued them from the grave.
21Let them give thanks for the LORD for his unfailing love and his wonderful deeds for men.

Psalm 106
8Yet he saved them for his name's sake, to make his mighty power know.
9He rebuked the Red Sea, and it dried up;
he led them through the depts as through a desert.
10He saved them from the hand of the foe; from the hand of the enemy he redeemed them.
11The waters covered their adversaries; not one of them survived.

12Then they believed his promises and sang his praise.

44But he took note of their distress when he heard their cry;
45for their sake he remember his covenant and out of his great love he relented.

Anonymous said...

To encourage you:

Have you seen this website?

It is always nice to hear from those who have gone "through" and are on the other side.

And the number who have made it through is growing!

Thanks to our glorious God!

Anonymous said...
This comment has been removed by a blog administrator.

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!