Starting at 4 pm yesterday evening when the stimulator was turned on, there was a sense that the three professionals who stood in front us were "signing off" ---the "rescue" was complete and Rod was invited to go home as a "free man".  An overwhelming sense of gratitude flooded through us towards the doctor and the Nevro technician who were saying "goodbye" with the promise of seeing us next week.  And yet there was a sense of vulnerability --emotionally and physically towards the new reality that Rod was told would "wash in" slowly over the next 3 days. 

Rod says:

I have asked myself many times...."how do I know if the system is working if I can't feel it?"  However, over the last 24 hours, I have begun to trust in the changes that I am feeling gradually in my body.  Last night, for example, I only woke twice to turn over -- a quality of sleep I have not experienced in years.  I also found that when I stood up and walked around, I realized that the pain was diminishing in all of the areas that have been so excruciating for last months and for years before.  To top it off, this evening I sat at the dinner table with Susan, Tante Tobia and Alice.  It was truly a celebration because it was the first time that I sat at the dinner table and engaged in conversation in more than a year and a half.  And yet I feel a sense of hesitancy. I don't want to let my mind run off into all the possibilities before I know what is going to be a sustained reality.
 
Ok...here we go...Rod says to start out with the fact that I (Susan) slept in until 10:00 this morning.  He can't remember the last time I slept in until 10!!  I think it has something to do with the fact that I did not sleep at all the night before the surgery and then stayed up all day yesterday.  Rod's thought is that it is my mind/body reaction to this journey that we are on....I will agree.  It was a relief to know that the surgery had been tehnically successful.

Although the technical outcome of the surgery was good, the impact of the implant will unfold over time.  Rod had to wait until this afternoon for the consult with the Nevro technician (Misha).  Misha arrived at 2:00 pm to explain the system to us and do the programming, but everything came to an unexpected halt when he realized that an x-ray of the implant had not yet been done.  About an hour later the x-ray had been completed and Misha was looking at the image only to note that it seemed that one lead had migrated slightly closer in relation to the second lead. In the land of spinal cord stimulators, any time that you hear electrodes have moved, it is not good news.  Misha disappeared to talk with Dr. van Praagh and we waited anxiously while trying not to jump to any conclusions.

When Misha returned, he was with Dr. van Praagh who reassuered us that although the one lead with 8 electrodes had migrated slightly, it was still within a good overlapping range with the 8 electrodes on the second lead. This required some programming changes, but like many things, "the proof will be in the pudding"... over the next two to three days, we will begin to learn how well this first program will cover Rod's pain.  For the next three months Rod will have to be very careful in how he moves his torso so as not to cause further migration of the leads. 

The device was turned on at 4:00 pm and we were told that the effect will start to  phase in over the next 24 hours.  Rod can increase amplitude every 24 hours and on the third day he can switch to the second program if he wants to.  It was a little mind-blowing to hear Misha speak of the way that Nevro operates, which seemed counter-intuitive given the way that conventional spinal cord stimulation works.  One of the major differences is that a Nevro program provides pain relief from the waste down. Unlike conventional stimulators, you can not "zero in" on a specific region and it does not respond immediately to changes made to the program.  This is an inevitable difference because Nevro silences pain without creating alternate electrical sensations.  This is only the beginning of the differences.  Rod will be able to list more as the theoretical descriptions given to us by Misha today hopefully become reality for him.

This is Dr. van Praagh's first implant of a Nevro system, so he is as curious as we are. As Rod left the hospital this afternoon, Dr. van Praagh said he wasalready anticipating Rod's scheduled visit at 9 am on Thursday, March 22.  In the meantime, you have the advantage of getting updates as Rod becomes aware of the impact of the stimulator on his pain.
 
I think Dr. van Praagh met his match in Rod and the two of them created the “A-team” – two patient men with a resolve to reach their goal!  The surgery lasted 4.5 hours and Dr. van Praagh declared it was the hardest implant he had ever done in 16 years.  The scar tissue extended throughout the entire “sweet spot” or ideal location in Rod’s epidural space. As he eased the leads in, van Praagh’s needle kept hitting scar tissue. Each ‘hit’ was extremely painful for Rod who was under partial sedation so that he could communicate intelligently with van Praagh. 

Van Praagh took short breaks, re-assessed, and kept trying because he could tell that Rod had resolve to ‘hold on tight’.  After 3 attempts, and two bent needles, the electrodes were finally in place in the epidural space and the receiver was implanted in Rod’s hip.  The nurse practitioner indicated that it was “one hell of an operation”. The Nevro rep said that considering all the scar tissue, it was a successful implant and the leads were in the perfect spot. 

At the end, van Praagh was exhausted and  leaned close to Rod and said “I have the greatest respect for you.  You are an incredible patient and only for you would I try so long…other doctors would have given up”.  Rod said the probing and laying on his belly for 4.5 hours caused excruciating pain, despite attempts to administer IV pain control.  Rod used the discipline of meditation to pull him through the moments between the painful ‘hits’ – he said he focused on the image Joya gave him of our family sitting together at the dinner table.  We pray that the results will far outweigh the trauma of these hours of surgery.

Tomorrow Rod will have an x-ray in the morning and in the afternoon the Nevro technician will start up the system.  It will take at least 24 hours for Rod to identify any changes in pain in the area that is covered first….within 3 days that area should experience full coverage….and then a new area of his body will be programmed in, etc…over the next 18 days.  

Thank you so much for your words of encouragement and prayers for the work of this day!!  God was truly present in the room...an important member of the 'A Team".
 
Rod had to wake up at 5:45 this morning to take a shower with Hibiclense (an anti bacterial cleaner prescribed by the doctor) to ensure that he had no bacteria on his skin. (The hospitals here have 0 tolerance for infection -- so Rod has had anti-bacterial  cream --applied in the nose--for 2 days now, and has passed the MRSA testing).  Alice (my aunt's friend, picked us up at 6:15.The drive to the hospital in Apeldoorn was beautiful.  It is going  to be a sunny day. The fog was in wisps through the forest and there was dew on the ground.  The leaves are not out on the trees yet and the buds are barely showing....but it will come!

We got to the Gelre Hospital and went up to the 7th floor where Rod was admitted to the ward.  Anja, the nurse, asked him several more questions and filled in his chart and took my cell phone number (I bought a phone for 20 Euros for the month).  Rod had to take off his ear ring but could not get the ring off his finger, so I think they will have to cut it. He got into the blue hospital gown and then was very grateful to lay down on the bed. His pain levels were way up there.   About 7:45 the porter came in to take him to the surgical room. 

The doctor has allocated 4 hours in the surgical room for Rod, but it may not take that long. Alice drove me home and I have been sitting at our little table praying, having my devotions, drinking tea and looking out the window and listened to Kim Thiessen's song "We Come" and  the Toby Mac song "Get Back UP"  that Joya has adopted as a theme song for Rod...and is also an encouragement to all of us who have suffered with him over the months.  Joya's words to Rod this morning were: "It's your turn to shine again."  Anika noted on her facebook page "iIf you have an extra moment in your day send up prayer for him! It's crazy that in seconds the reality we have lived for a year and a half has the potential to be completely changed... :)

I will be heading over to Tante Tobia's home for coffee at 10:30 and waiting there for them to call me back to the hospital. I will drive there with on my own and stay as long as they let me....so I may not be able to provide another update for a while.

Thank you so much for your words of encouragement and your prayers -- an amazing avenue of support!!

 
This morning Rod and I went to the Gelre Hospital in Apeldoorn to go through pre- surgical screening meet  and then meet with Dr. van Praagh.  Both of us hit a panic moment when we were sitting with the pre-surgical nurse who was struggling with her english. She asked Rod what he was allergic to and Rod said  "Iodine" .  "What is that?" she inquired, "how do you spell it?"  In a strange way both of us were hit with the realization that we had come half way around the world to have surgery done in a country where we didn't speak the language and many of the meds had different names.  As we waited to see Dr. van Praagh, we exchanged doubtful glances and took a deep breath.

As soon as we entered Dr. van Praagh's room, we were offered a cup of tea or coffee.  "I have read all about you and it is good to finally meet you" says v. Praagh as he shakes our hands.  We apologize that he has had to read so much... to which he assured us that it had been very helpful to have all the reports.

Without a doubt Dr. van Praagh is an extreme gentleman and immediately puts his patients at ease.  He had obviously read and was thoroughly acquainted with Rod's history.  The ensuing discussion put any lingering doubts we may have had to the side.  Dr. van Praagh was thorough in his explanation of the procedure and his technique, was open to questions, and went out of his way to make sure we understood the upcoming procedure.

When we returned to our little house in the woods, it was with a renewed sense of assurance that we had made the right choice.  Now Rod has one more day to rest before the surgery.  Yesterday Rod's had an 8 hour stretch of stabbing pain, which thankfully did not last through the night.  Rod says:  "I am ready, let's get this over with!"

A big thanks to Alice de Tombe (Tante Tobia's friend) who drove us to the hospital and waited for the morning.  Tante Tobia is quite ill with a cold/flu bug and really regrets not being able to be with us today.
 
For a few weeks before we left on this trip, we did not blog. Rod was in a dark valley for some of the time and Susan was trying to keep everything on track leading up to the our departure.  Joya and Anika felt the stress in addition to their own busy lives.  We want to thank you for the ways that you supported us through this stretch of the journey.
= a pizza meal sent from Ohio via Boston Pizza
= driving Joya to her violin  lesson when Susan was out of town
= a Bengali meal sent in vacuum  packs from Minesota along with a Book of Psalms in Calligraphy
= a wool  mattress topper sent from Manitoba for Rod which provided a very comfortable cushioning layer for  his hips
= a Lasagna meal hand delivered from Medicine Hat (4 hours away) by  an MCCA board member who didn't know Rod but wanted to stop in to meet him 
= 4  year old Zander stopping in for a visit to say goodbye to Rod and find out more  about his pain
= those who were able to join us for a meal, a  coffee, or just a visit
= For those who called or e-mailed to come by for a visit when Rod had the "no visitors" sign hung, your effort was noticed and meant a lot!!
= the many e-mails and hand written notes and telephone calls just to let us know that you were thinking about us and praying for us.
= The individual checks for Anika and for Joya to let them know that you noticed their resiliency and wanted them to have some spending money for their trip.
= For lending a listening ear and a few moments to cry together.
= For those who have and are PRAYING -- for patience for the process and trust in the people involved, for the travel and all the details involved, for Anika and Joya...
= For the preschoolers in Macau Mennonite Church who expressed their prayers for Rod to Tobia.
= for those who have offered to keep on eye on things while we are gone -- meals for the girls, housesitting, taking care of the dogs, shovelling the walks, being "on call" for anything that needs fixing in the house,
= For Rose, Rod's caregiver, who got us through the week before we left by keeping things going around the house.
= For Rod's mom, Phyllis, who is with Anika and Joya until march 25 when they fly here, thanks to a generous gift from a friend.
= For the people who insisted that I be beside Rod on the plane (business class)...it was so important to be with him
= and for all the ways of caring that we have inevitably forgotten....Thank you so much!
When we stop to think of it, we feel overwhelmed ....and it continues ...in Netherlands....in Olds....around the world.
Thank you...
 
I hope you got to where you went
I hope you get what you went for
I hope to see you when you get back
I hope you get back here soon

Don't take discomfort for a future
Keep it a legacy.
 
Before we left Rod said, "This will only be the third time in 18 months that i have been out of the house, except for doctors' visits."  I hate to say it, but this trip to Holland is actually a "doctor's visit"....but we are so grateful to be in such a beautiful part of Holland -- the Veluwe (forest and heather fields).  Thank you, Abe Janzen, for showing up at the airport to bless us on the journey.  .

All things considered, the trip went smoothly.  John Gold, our travel agent, had arrived at the airport early to make sure everything was in place.  Rod used his electric wheelchair right to the gate and it was taken down, crated and put in the hold of the plane.  It was so good that I was able to sit beside Rod in business class -- to help him turn/get comfortable, eat, meds, and stay hydrated as well as "de-hydrate" ...  The seats could stretch into a fairly flat reclining position so Rod could be on his side with his leg pillow in place.  Rod was really rateful for the wool body pad that our friends, the Kroeker's, made and sent to Rod. They own Shepherds Dream  (click to read abou this cool bedding)

We arrived at 8:30  am on Sunday and were met by my Tante Tobia and her friend Corinne. They drove us back to Apeldoorn in an accessible mini bus. when Rod finally lay down on his bed, he was so exhausted and grateful to  be laying down again.  His body is not used to moving around this much.  Tante Tobia bought us groceries, had fresh tulips on the table, a bottle of red wine,...and the couple who owned the cottage had just set up wireless internet so that we could access it.  SO COOL

    Rod and Susan

    "If Pain is the ring, Frodo is to Rod as Sam is to Susan."
    (see 02/07/12 for an explanation)


    for the FUNDING progress update 
    CLICK HERE


    A theme song:
    "We Come" 
    by Kim Thiessen
    (Kim works in the MCC Office)


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