Jessica's Journey: xoxo***KISSES***xoxo

Monday, February 15, 2010

xoxoKISSESxoxo

Hi everyone,

To view Jessica on Fox TV, Click on Link Below:

htt p://www.youtube.com/watch?v=PW_vstm0bS8

Yesterday in Hospital San Jose Tec:

Jessica received her "Valentine" presents yesterday. I bought her a balloon and a chocolate bar that said" "I Love You" on it. Dr. Cantu came in at @ 12:30 and gave Jessica two presents as well! First, he gave her a big kiss on her cheek to wish her a happy day (She's such a lucky girl...) and also he gave her another booster while raising the bed a little more to help her body with trying to sit up a little more. I gave Dr. Cantu his present as well - 50 KISSES - Not "real" kisses, but the Hershey's chocolate kisses - half plain/half with almonds. Dr. Cantu loves them. Every time he comes into Jessica's room he manages to eat at least 5 of them!(But whose counting?) By the way, did you know that each kiss contains only 25 calories - so Enjoy them! Also, I handed out kisses to all the nurses who came into Jessica's room yesterday. As soon as word got out that I was handing out "kisses", we saw nurses that we had never seen before!!!(Haha)

Special Thanks:
Special thanks to Dr. Rainbow and her grandson Eugenio who accompanied me to the local H.E.B. (food store) on Saturday. I hired Angeles, one of the "english-speaking" nurses to stay with Jessica, so I could do a "normal" thing and go food shopping! Yes, food shopping! It was very therapeutic for me. I was also able to sample the local mexican cuisine, as they had free samples in each aisle (just like Costco!).

Special thanks to Barbara who came by with delicious sandwiches and a piece of chocolate cake. It's so good to have homemade food. We enjoy her visits very much.

Also, special thanks to Sylvia who came by on Valentine's Day with a heart-shaped cake and other goodies. I shared it with the other family that is here from the states, as well as the nurses. Sylvia is a very special person and we enjoy her company as well - so Thanks again for Always being there Sylvia!

Update:
Elana is still here on the 8th floor. She is from Florida and she came out of the coma last Saturday. She and her husband Lance are very nice people and they will probably be here until Dr.Cantu feels she is ready to go home.
Also, another patient, Rachel, from N.Y., was put into the coma yesterday. Please pray for her and her family while she is in the coma.
I have also heard from Fern who returned to Canada after her boosters. She was here last week for 4 days with her friend Kathy. Fern was able to go to the movies with her husband - praise God - small steps - towards the road to recovery. I also heard from Justin and his family, back in Pennsylvania, and from Devon and her family, from Connecticut, she was Jessica's coma buddy, and from Emily, from California, as well. Please pray for these special people as they continue their daily struggles with RSD.

All of the people and families we have met while here in Monterrey, whether they are "coma" patients & families, or just All of the doctors and nurses and wonderful people from Monterrey that we have met while here --- have become very special to us. They help us in so many ways - we are thankful to God for All of the people he has put into our path since we arrived here. God is truly an awesome God who works in mysterious ways for the Good of His people that He Loves!

Romans 1:8:
"First, I thank my God through Jesus Christ for All of you, because your faith is being reported all over the world".
Hebrews 13:2
"Do not forget to entertain strangers, for by so doing some people have entertained angels without knowing it".

In God's love, always,
Sarah Gina (Jessica's Mom)*

INTERESTING POST-SCRIPT:
At 4:00 PM today - Pastor Long from the Union Church visited us once again. I walked out of Jessica's room to greet him and in his hands he had a ziploc bag full of Hershey kisses for Jessica! I asked him if he had read the blog yet today. He said he hadn't! God does work in mysterious ways - and he really does have a sense of humor!!!!

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

8 comments:

Anonymous said...: How wonderful to hear that your sweet Jessica is continuing to take small steps forward and you were able to get out for a while. I bet it was nice to feel the sun and the fresh air!

I am continually amazed at how God provides and always more than we can imagine.

There is a light at the end of the tunnel (and it seems to be getting brighter).

May God continue to richly bless your family!

With love & prayers,
The Turners; February 15, 2010 at 12:13 PM
Anonymous said...: It is amazing what a little bit of sweetness does to people. Chocolate is usually the best. Gina you are always so thoughtful and have the gift of planning ahead with gooodies!

God works in mysterious ways! true true so very true.
and wonderouse ways!

We all carry our crosses but today the Lord lightened my load. Both yesterday and today I was able to hug and kiss my 4 grandchildren. what a miracle babies are! What a wonderous gift from God!.
My thought for today would be to think about the wonders that God has given each of us. Perhaps that is a good daily lenten activity- write down the wonders of the day. How easily we forget the simple things we have that others do not.
When I had my appendix episode and couldn't walk or work for many weeks I couldn't believe how many things I took for granted.
I pray for all to have a little less pain today.
Love from Saratoga,
Linda
I will be visiting my parents(almost 90 and 93) I hope their computer is up so I can keep up with the blogs.; February 15, 2010 at 5:10 PM
JennKurz said...: Praise God that Jessica is beginning to sit up a little bit more. That is wonderful news.

I'm sure that you enjoyed your time at the grocery store and sampling Mexican Cusine.

Wishing you a belated Valentines Day and continued prayers for all of the coma patients in Mexico.
Jenn; February 16, 2010 at 10:08 AM
Anonymous said...: Voice of Truth
by Casting Crowns

Oh,what I would do to have
the kind of faith it takes
To climb out of this boat I'm in
Onto the crashing waves
To step out of my comfort zone
Into the realm of the unknown
Where Jesus is,
And he's holding out his hand

But the waves are calling out my name
and they laugh at me
Reminding me of all the times
I've tried before and failed
The waves they keep on telling me
time and time again
"Boy, you'll never win,
you'll never win."

But the Voice of truth tells me a different story
the Voice of truth says "do not be afraid!"
and the Voice of truth says "this is for My glory"
Out of all the voices calling out to me
I will choose to listen and believe the Voice of truth

Oh, what I would do
to have the kind of strength it takes
To stand before a giant
with just a sling and a stone
Surrounded by the sound
of a thousand warriors
shaking in their armor
Wishing they'd have had the strength to stand

But the giant's calling out
my name and he laughs at me
Reminding me of all the times
I've tried before and failed
The giant keeps on telling me
time and time again
"Boy you'll never win,
you'll never win."

But the voice of truth tells me a different story
the Voice of truth says "do not be afraid!"
and the Voice of truth says "this is for My glory"
Out of all the voices calling out to me
I will choose to listen and believe the Voice of truth

But the stone was just the right size
to put the giant on the ground
and the waves they don't seem so high
from on top of them looking down
I will soar with the wings of eagles
when I stop and listen to the sound of Jesus
singing over me

But the Voice of truth tells me a different story
The Voice of truth says "do not be afraid!"
And the Voice of truth says "this is for my glory"
Out of all the voices calling out to me (calling out to me)
I will choose to listen and believe (I will choose to listen and believe)
I will choose to listen and believe the Voice of truth

I will listen and believe
I will listen and believe the Voice of truth
I will listen and believe
'Cause Jesus you are the Voice of truth
And I will listen to you.. oh you are the Voice of truth; February 16, 2010 at 12:05 PM
Nancy said...: Wow if I knew there was going to be CHOCOLATE Kissed and ones from Dr. Cantu, I'd have been on a flight already!!

We are so happy with the progress you lovely ladies are making and the bonds of friendship that this journey has brought to you.

EVERYONE asked at our Valentine's Boomer Party about Jessica and you Sarah Gina. You have touched the HEARTS (how apropos) of the world!

In love and praise & prayers,
Nancy
X-chocolate style!!; February 16, 2010 at 12:32 PM
Anonymous said...: I am so happy to hear that Jessica is making progress! Your postings are absolutely inspirational. God is speaking to others through you. Faithful in Prayer, Crystal; February 16, 2010 at 2:28 PM
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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!

What is RSD?

Imagine what it would be like to endure a burning sensation so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire...

Reflex Sympathetic Dystrophy (RSD) is a painful & debilitating chronic neurological disorder that occurs when the nervous system malfunctions in response to a injury or illness- in Jessica's case- Lyme disease.

RSD is characterized by: Continuous sharp, stabbing & burning pain; Extreme sensitivity to touch; Severe headaches; Painful skin ulcers; Intense muscle spams; Softening of bones; Dystonia; Skin temperature & color changes; Hair/nail growth changes; Muscle atrophy; Vascular & Autonomic dysfunction; Sensitivity to lights & sounds and Paralysis.

This rare condition is a mystery to scientists & often is misdiagnosed. Much more research is needed to find the cause of RSD and ways to treat and prevent it.

Ketamine Coma Study

The Ketamine Coma Study is a clinical trial procedure being conducted in both Germany and Mexico, that is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options.

During this procedure, patients are put into a ketamine-induced coma-- essentially shutting the body down & giving it time to "reset" the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.

So far, only about 100 patients have taken part in the study. For many, it has been miraculous!
However, like any treatment, there are no guarantees. There are also significant risks, especially in Jessica's fragile condition.

The Ketamine Coma shows great promise as a treatment for severe RSD- the key is going to be more research.

What is Ketamine?

Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. It was developed in the 1970s as a medical anesthetic for both humans and animals.

There are currently three kinds of ketamine treatments: The Awake technique (continuous low dosage for 4-5 days), the Outpatient low-dose infusion (4-5 hours a day for two weeks, then gradually-lower doses), and the Coma technique (continuous high dosage for about a week).

The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and "reboots" the patient's brain, much like a computer.

Ketamine can have some nasty side effects. Especially when emerging from the coma, patients may experience hallucinations, lack of body awareness, visual distortions, confusion, and weakness.

Why Mexico?

There is a popular misconception that medical care in Mexico is of inferior quality. However, this is not (always) the case. In fact, many facilities in Mexico are state of the art, with top notch care.

Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries.

Jessica's doctor, Dr. Anthony Kirkpatrick, is one of only a few specialists involved with this study in the U.S. He has teamed up with Dr. Fernando Cantu and his team in Mexico to perform the Ketamine Coma.