THE COMA BEGINS

Dr. Cantu came in to see Lindsay at 8:30 am on Monday morning.  Consents were signed and some final questions and instructions were given.  By 9:30 Dr. Cantu and the nurses were wheeling Lindsay down to the ICU.  Joan and I were allowed back in the room for some 'sweet dreams', 'I love you' and 'we'll be praying'.  Lindsay wanted to be sure her brothers knew she was find and loves them along with I love you to family.  She said 'I've waited a long time for this!'  Lindsay was very optimistic and looking forward to a new life as she went into the coma.

We were then asked to leave as Dr. Cantu and the other doctors and nurses began to give Lindsay medications to prepare her for the coma.

We waited in the surgical/ICU waiting room which seems to always be a flurry of lots of people gathering, talking and waiting for news of the family members and this was Sunday!  At times there is standing room only as whole families (aunts, uncles, cousins and grandparents) come to support one another.  We seem to be adjusting to hearing people talking all around us and having no idea what is being said.  It sort of has become a 'hum' in the background.---Until we need to communicate!---

It was quite a while until we could actually go back and see Lindsay but Dr. Cantu assured us she was doing very well and that things were progressing nicely.  When we were allowed back to see her we had to wash our hands and 'gown up'.  We were allowed back one at a time.  Lindsay was resting peacefully as Dr. Cantu explained to me what all the monitors, lines and machines meant.  We stayed only a short while as they were trying to get her to a deep state of consciousness.  Silvia, her nurse, is wonderful and very caring.  She speaks some English so we understand what is happening.

Tuesday morning Dr. Cantu said she was doing fine but was requiring a lot of ketamine to keep her sedated.

I have not been feeling well today '?virus?'  So I stayed in the hotel room.  Joan went to be with Lindsay.  However Lindsay would respond by eye movements and all things laughter when Joan spoke with her.  Everyone got a good laugh out of that but she does seem peaceful right now.

Due to her responsiveness they are trying to keep things very quiet, darkened her room and the door closed.  It is glass so we can see her, but for now we can't go in.

Please pray:

-that she would respond adequately to the ketamine to keep her well sedated

-pray that she does not get any infections

-pray for Dr. Cantu and his team and the nurses as they make decisions for Lindsay's care

-pray Joan stays well and does not catch what ever 'bug' I have and that I improve quickly

-pray that Lindsay's treatment is 100% successful and her nervous system is reset

-begin to pay that as teh doctors reduce her medication on Friday morning that it is not frightening for her

-pray that her GI track begins to function, but gently without a lot of pain

At this tie there will probably be little change as Lindsay is 'sleeping'.  But I promise to update you as things change and with any new prayer requests.

We are forever grateful to you all for your covering of prayer and love.  It is truly felt and supportive.

To Pleasant Dreams, God Bless

Sharon

WE ARE HERE

Ola' form Monterrey, Mexico!!!

We just finally got connected here in internet.  There was a bad internet connection here in Lindsay's room.  They repaired that today so we could not get online until this evening.  I am sorry for the delayed update.

We arrived safely in Monterrey on Wed, right on schedule, 4:30 Eastern Standard Time, 3:30 Monterrey time.  We had several of the same flight crew from our trip to Florida.  That was helpful because they were prepared for Lindsay's needs.  The flight went well, but the ground ambulance ride was torturous for Lindsay.  She feels every vibration that is of no significance to the rest of us but causes severe pain for Lindsay.  So by the time we got to San Jose Hospital she was in excruciating pain.  The airport may not have been that far from the hospital but the ride seemed to last for hours.

It is more than a bit overwhelming and a lot frightening being rolled into a foreign emergency room and 20 people are speaking all around you but saying nothing you understand.  It was a very helpless feeling.

Thankfully they were expecting us.  Two medical students eventually emerged from the crowd of medical personnel surrounding the stretch who also spoke English.  One of he air ambulance medics spoke a bit of Spanish.  But it was quite a scene.

Dr. Cantu arrived in the ER shortly shortly after our arrival.  We seemed to sense his compassion at first meeting (and he speaks great English).  He wanted to get Lindsay settled in her room before examining her.  So with 5 suitcases, a cooler filled with IV's and medications, and 2 large bags of supplies in tow, they moved LIndsay into her room on the 8th floor.

It took quite a wile but the pain did settle back to her baseline.  The room is both nice and quite large with a sofa where I sleep at night.  Out her window is a huge mountain which is beautiful.  Different mountains surround most of Monterrey.  Lindsay's medication schedule is complex due to the language barrier so Dr. Cantu is allowing me to give LIndsay her medications, which has worked out well for us.

The nursing staff is very friendly but few speak any English.  I am so glad for Joan as we bumble through our Spanish communication skills.  None of us speak any Spanish.  It is nice to always have someone else who understands you.  We have a lot of comically 'fish our of water' moments.  It is nice to have someone to laugh with you.  So pointing and using a hand held translator, have been our main sources of communication.  The only thing that works better is finding a doctor.  Most of the doctors speak some English and are kind and willing to translate for us, even in the cafeteria line.

Going to the cafeteria is quite an adventure.  Few items look familiar and the menu of course we cannot read.  It will take some adjustment.  Joan and I ordered a club sandwich and a hamburger so far with someone's help, but both came with ham, cheese and avocado slices.  Not what we were expecting.  

We were able to experience an authentic Mexican restaurant last night, out of the generosity of Elena, one of the previous coma patients and her family.  They knew where to go, how to get there AND what to order.  It was delicious!!!  We look forward to the day when Lindsay can go with us.

We have met two of the previous coma patients here, Ana Sophia (pictured with her Mom and Lindsay above), and Elena and some of their families.  For those we have not met personally we have spoken to on the phone.  What amazing, selfless people!  They have all been of tremendous encouragement, but with realistic expectations of outcome.  Hw wonderful for us, especially LIndsay to have others who truly understand how she feels.  We are right where we need to be... in Mexico.  I truly believe this is exactly where the Lord wanted Lindsay all along.  The doctors are amazing and so caring.  And I will be able to be with her the whole time.

So LIndsay has been resting and recouping from the trip in preparation for the upcoming coma.  She is very positive and hopeful.  It is going to be a tough week, so please keep praying.  The coma will begin tomorrow morning.

With deepest gratitude,

Sharon

NOT EVEN HURRICANE DEAN COULD STOP US

Well despite winds, rain, threats of Hurricane Dean, planes on temporary hold for emergency evacuations... EVERYTHING is now a GO.

We WILL be flying to Mexico tomorrow!!!!  I can't believe it is finally happening!

With fear, wonderful Hope, and heartfelt gratitude to you all we will fly out tomorrow,

I will keep you posted.

This picture shows Lindsay and her condition.  When we return we pray that she is able to return to the Lindsay we know!

Gratefully Yours

Sharon

PREPARATION FOR MEXICO

Hi!!!

Well things are moving very quickly now.  I have lists for my lists.  Every time I cross off two items from my list I add three more things I must do.

WE LEAVE FOR MEXICO NEXT WEDNESDAY!!!!

It is both terrifying and hopeful.  As the doctors have explained to us, due to the nature of the coma and Lindsay's debilitated state of health, it will be a long slow path back to some normalcy.  The road to recovery will prove to be difficult as well as an incredible challenge.  But if we are heading in the right direction, that will be an amazing encouragement.  One of Lindsay's many goals as she improves, is to run again in Valley Forge Park. Just how amazing would that be?!

Her coma will begin on Sunday August 26th.  We covet your continued prayers throughout this time.  The coma causes patients to be terribly weak.  Pray that God would renew her strength in a miraculous way during the coma and afterwards.  Pray that as they change her medications that there would be no ill effects.  Pray for pleasant dreams as opposed to nightmares during the course of her treatment.  Pray against any complications such as infections, seizures and pneumonias.  Pray for those of us who go with Lindsay to support and love her through this coma.  Pray we would stay healthy and rested.  Pray for divine intervention for each of us to know how best to comfort Lindsay and encourage her.  Pray for the communication barrier.  I haven't even opened my Spanish dictionary yet.

We are so grateful for your enduring with us through the many months of waiting.  We are forever in your debt for giving Lindsay this opportunity for treatment, to decrease the pain and return to life again.  Without you this would not be possible.  Thank you for your prayers, your love and your understanding.  It has sustained us, and filled us with hope, when it seemed there was none, as we have seen God work through each of you.

I will try to keep you posted of Lindsay's progress as we are in Mexico.  Just keep praying!

With deepest appreciation and gratitude.

God's Blessings

Sharon

CHANGE OF PLANS

Hi!  Finally some news!!!

Well... where to begin.  Things have been at such a standstill for so long that it is hard for me to adjust to the speed at which things seem to be moving now.  So much can change in an instance.  And usually not in the direction I had planned.

Anyway... much has happened in the last week.  Since the German physicians have not been in communication with Dr. Schwartzman or given a date yet for Lindsay's treatment in Germany, Dr. Schwartzman contacted a college, in Florida who also specializes in RSD. (Apparently Germany is not accepting new patients at this time.)  That physician agreed to consult on Lindsay's case.  He squeezed her into his schedule this past week.  So within 48-72 hours we were on an air ambulance to Florida to meet this new doctor.  It was a strenuous week of travel, appointments and more tests.  The travel was excruciatingly painful for Lindsay.  But we made it.  We just arrived home after the consultation and Dr. Kirkpatrick agreed to accept Lindsay for the Ketamine Coma Treatment Study that he is now coordinating in Mexico!!!!

So I guess I better turn in my German dictionary for a Spanish one.  Who can know or even guess the mind of God!!

At this time, it appears this treatment will be done in late August. We are thrilled that after all this time of arduous waiting Lindsay will now have the opportunity to regain her life!  Please pray that all the details will be ironed out and that the coma will go well and without complications.  It is a very scary and hopeful all at the same time.  Thank you all so much for all your patience, prayers and concerns during this very long and difficult time of waiting.  We will continue to keep you posted as we prepare for this trip upcoming treatment of HOPE as it evolves.

We are deeply grateful for Dr. Schwartzman, Dr. Kirkpatrick and to each of you, for all of your support and resources that will now make this possible.

Words will never express the depth of appreciation and indebtedness we feel towards you all.

Our love and God's Blessings to you all

Sharon

STILL WAITING

Hey Everyone!

Please forgive my absence of 'Lindsay updates'.  Each week we keep thinking that a new date from Germany will be coming...so I have held off updating the journal.  I had hoped by now that this entry would be giving you all 'THE DATE' for our departure to Germany. However, at this point in time we are still waiting and in a holding pattern.  When I spoke to Lindsay's doctor this past week, he said that the German physicians have the tests and paperwork they requested and at this time they are waiting for Germany to establish a date for treatment.  I so wish I had more information.

By the time you all read this I hope that I will be needing to write yet another entry telling you that we received the call with 'the date'.  Please continue to keep us all in your prayers as this waiting time is slow, discouraging and very difficult.  We had so hoped they would have heard by now or even better be there and in the middle of Lindsay's treatment.  God's timing is perfect but it doesn't necessarily correspond with my time line or desires.  As always pray for Lindsay.

Again Thank you all so much for your continued love, concern and prayers as you all wait with us.

I will continue to keep you posted.

Love and Blessings to all

Sharon

WAITING

HI All!

Thank you so much for all your well wishes and words of encouragement.  It means so much to all of us, But especially Lindsay knowing there are so many of you still praying for her and encouraging her on.  Thank you so much!

I am so sorry it has taken me so long to update our journal.  We had so hoped we would have been to Germany and back by now.  BUt we are still waiting.  Here is a status on the treatment, fundraising and Lindsay's current condition.

Treatment in Germany

As you may recall, the RSD doctors in Germany requested some clarification regarding Lindsay's second condition, Porphyria. Before setting a new date for Lindsay's treatment, two tests were conducted, but they did not provide enough information for the German doctors to set the date.  A third test has been requested and we hope to have results soon.  While this has caused an unexpected and unfortunate delay, we continue to be hopeful that we will be traveling to Germany very soon.

Fundraising

Good news on the fundraising front.  Through the generosity of our friends, family, neighbors and compassionate strangers in PA, NY, VA, W. VA and beyond we have reached our fundraising goal for Lindsay's trip.  To date, the New Hope for Lindsay campaign has raised more than $200,000 which should provide us with the funds we need to say yes when the German physicians call with a treatment date.  We are so grateful to everyone that had any part in helping us to reach this goal.  This is a tremendous blessing and we are eager to apply these funds to Lindsay's treatment very soon.

Lindsay's Current Condition

She has needed to be hospitalized several times since I last wrote, but Lindsay is currently home.  We recently found out the physicians in Germany will not be accepting any patients in May but are looking for a June date very soon.

Blessings and Gratitude

Sharon