Blog is filled with pre 3rd brain surgery, and walking thru the 3rd awake brain surgery. Also I've been fighting severe body pain for over 7 years. Amazing what your brain misses when gone. It has almost been 8 years since my 3rd awake brain surgery. I have taken myself off the extreme pain meds (4) and only on once and a great while. God is in control!! My Goal is to help others!
2010/02/12
Heather's Epilepsy Journey - Day 12
What a day to remember...I think I'll call it the HALO day.
Heather had her awake brain surgery today. The morning started out very well..she slept soundly through the night and we had a nice morning together before she was rolled into pre-op. Her mood was outstanding. She was excited, giddy and intypical Heather fashion full of dry humor. At 9:30am they let me kiss her goodbye and off she went..ready for the journey she has been wanted for over 5 years.
As I tweeted about her..the outpouring of prayers, texts and emails was inspiring. I apologize for not getting back to each of you personally..but I lost count somewhere around 100 messages. God has blessed us and we cannot begin to express what your friendship means to our family. Each of you are a true gift from heaven.
After a 3:30 surgery I was summoned by the nurses to meet with Dr. Zimmerman. Dr. Z was optimistic as to the potential outcome. He explained the procedure and in my non-technical terms..and to the best of my understanding..this is what happened.
They first put Heather under with a light sedative. Once she was asleep they positioned her on her back and turned her head all the way to the right to expose the left side of her head. Once in this postion they shaved a few portions of her head, drilled a few holes and secured a "Halo" on her head. This halo was then secured to the table so she could not move. Once this was complete they opened her skull and removed the grids that had been inserted in her brain last week. At this point they woke Heather up. There was a drape over her face and a neurologist began to test Heather's ability to function, read, hear, see, understand etc. as Dr. Z began to identify exactly what portions could be removed. He told me he cuts the blood vessels in the Hot Spot Zones then carefully tests how much addtional brain can be removed around the Hot spots. When an activity caused Heather to stop functioning..they went no further and sucked the brain matter out that had been identified. I am sure this is WAY OFF..but like I said...this is what I got out of our 5 minute conversation. Dr. Z was concerned about her periphical vision...but other than that he thought she can through everything very well. She was joking all throughout the procedure with the Dr's and nurses...she was a model patient. He had warned her that once she was awaken..if she "freaked out" due to the halo securing her Head in place and her inability to move..the procedure would have to be terminated. Not a chance with my girl! ;)
I got to see her a few hours later and what I discovered completely amazed me. I walked into the ICU and she was sitting up, in some pain..but NOTHING like last week. She was smiling, talking, hungry...had had not vomited one time. In all reality..she looked the same as before the surgery! We had a wonderful time together and i just was in awe. As one of our friends put it..she is Wonder Woman! I got her some food and we began to settle into the evening. We took pictures, and she even started calling and testing people...:) you can't keep a good woman down. She was SO excited about the procedure. We did notice that she has some issues with her upper right peripheral vision..but the Dr's seem to think that may come back in time.
Everything was perfect..until out of the blue she looked at me and started saying things that didn't make sense..she grabbed my hand and started to have a seizure. She was "gone" for about 20 seconds..just starring and smaking her lips. This is one of her typical seizures. It made my heart sink...but then again, her body has been tramatized, she does not have any seizure meds in her system and the hospital was trying a new type of pain med she had never had before. These, combined with the fact that we knew they could not get all the Hot Spots..made it bearable.
I know we are praying for a complete seizure free life...but the goal is for her to reduce the medications and have a better quality of life so she can enjoy each day to it's fullest and not be confined to our home. We are encouraged by what the Dr's WERE able to remove today...we will just wait, pray and see what God has in store.
The reason why I'm calling this a HALO day is that it started with her being confined and secured to the bed...not being able to move because of her Halo. However, I know as Heather moves forward...no matter what the outcome of today..Heather will NOT be confined in this life..she is going to follow hard after God and do His plans to the best of her ability. She is going to continue to strive to by Holy for Him. The symbol for Holy is a Halo...
Heather..my hope, dream and prayer for you is that you always have a Halo over your head. You amaze me...I am so proud of you. Never give up, Always have faith and continue to be my Wonder Woman.
The journey continues...
Heather's Epilepsy Journey - Day 11
The time has come...
Let's get ready to rumble...
Now or never...
Brain surgery or bust..
Ready or not her it comes...
I guess you get the idea. Tomorrow morning is the day Heather has waited 5 yrs to arrive. She goes into surgery around 8:00am. It will not be a simple surgery, but we have faith and complete confidence that Jesus will shine...and we will all give Him glory. I know His plans will be completed in her..I just pray those plans match up with our hopes and desires.
You would all be proud of my girl. She is excited and giddy. You would think she is getting married tomorrow not having surgery. :) The only ill effects she has at this moment is withdrawl symptoms from not being on her normal meds. She is a bit shaky and is having trouble sleeping. We know these symptoms will go away after the surgery...and hopefully in the not to distant future she will have to go thru withdrawl for good since she won't have to be on meds any longer!!! Make it so Lord! ;)
An update on my post from last night regarding her hearing issues.... Apparently she has fluid on her brain and in her inner ear. The fluid is causing sound to echo and take longer to reach her left eardrum compared to the right. so everything is in stereo...Paying that will go away after the surgery as well.
I will be here the next 48 hours and keep everyone up to date on her progress via Twitter and Facebook.
Heather and I want to thank each of you for being on this journey with us. You have made it a blessed trip and we look forward to the first day of the rest of lives tomorrow..no matter what that holds.
Where two or three are gathered..Jesus is in the midst of them. Be with us tomorrow..I want Jesus holding her hand.
We love you all....
2010/02/11
Heather's Epilepsy Journey - Day 10
Today is a day the Lord hath made..let us rejoice and be glad in it!
Are you a procrastinator? I know many times I am...there are so many things going on in life that sometimes, or many times I say to myself..I'll get started tomorrow. You do realize that God calls us to use everyday for His glory!
Heather posted a video today and the theme song states we should "sing until the whole world hears!" What are we to sing about? The power, amazing love and Good News of Jesus. No matter what we are going through in life, we can still rejoice and be glad in it!!!..if we know Jesus and have him in our lives. What a sad life it would be without knowing Him.
Our church recently did a series on Worship. Worship is so much more than singing..it is spending each moment sharing our love for Jesus with those around us..being Him in the flesh and "singing till the whole world hears"...
I am proud of Heather for her "Voice" in this world. she is not the greatest singer of all time..but she does spend each day doing her best to worship Jesus and she certainly does her best ot rejoice in each day.She has helped me pick up the pass in my walk with Jesus and become less of a procrastinator. She encourages me to "sing" with her..and for that I am eternally grateful. Today was a fairly good day for her. They have officially scheduled her resection surgery for Friday morning. The Dr's believe they have the data required for the surgery. Please pray that it will be a success and that Heather will finally be free of this "thorn" she has lived with her entire life. However, no matter what happens..please pray that she will be able to rebound from the surgery and continue to impact the lives of people in her worship of Jesus.
Tonight she has notified me that she is having an issue with her hearing. I am not certain what the issue is..I am trying to track her down for the details..please pray that whatever is causing her to be concerned tonight will disappear an her hearing will go back to normal. Music is such a key part of her life..Please pray.
I also heard Heather mention today that she wants to "Live like she is dying"...That is such a great song. May each and everyone of you...live for Jesus. may you strive to worship our Lord. May He bless your singing and may we procrastinate less...Live like you are dying>
We love you and God Bless.
P.S.- I will be spending the next couple of nights at the hospital with Heather so expect more regular updates on Twitter @flyingchristian and my Facebook.
Are you a procrastinator? I know many times I am...there are so many things going on in life that sometimes, or many times I say to myself..I'll get started tomorrow. You do realize that God calls us to use everyday for His glory!
Heather posted a video today and the theme song states we should "sing until the whole world hears!" What are we to sing about? The power, amazing love and Good News of Jesus. No matter what we are going through in life, we can still rejoice and be glad in it!!!..if we know Jesus and have him in our lives. What a sad life it would be without knowing Him.
Our church recently did a series on Worship. Worship is so much more than singing..it is spending each moment sharing our love for Jesus with those around us..being Him in the flesh and "singing till the whole world hears"...
I am proud of Heather for her "Voice" in this world. she is not the greatest singer of all time..but she does spend each day doing her best to worship Jesus and she certainly does her best ot rejoice in each day.She has helped me pick up the pass in my walk with Jesus and become less of a procrastinator. She encourages me to "sing" with her..and for that I am eternally grateful. Today was a fairly good day for her. They have officially scheduled her resection surgery for Friday morning. The Dr's believe they have the data required for the surgery. Please pray that it will be a success and that Heather will finally be free of this "thorn" she has lived with her entire life. However, no matter what happens..please pray that she will be able to rebound from the surgery and continue to impact the lives of people in her worship of Jesus.
Tonight she has notified me that she is having an issue with her hearing. I am not certain what the issue is..I am trying to track her down for the details..please pray that whatever is causing her to be concerned tonight will disappear an her hearing will go back to normal. Music is such a key part of her life..Please pray.
I also heard Heather mention today that she wants to "Live like she is dying"...That is such a great song. May each and everyone of you...live for Jesus. may you strive to worship our Lord. May He bless your singing and may we procrastinate less...Live like you are dying>
We love you and God Bless.
P.S.- I will be spending the next couple of nights at the hospital with Heather so expect more regular updates on Twitter @flyingchristian and my Facebook.
2010/02/09
Heather's Epilepsy Journey - Day 9
Today I am going to leave the update to my wife..the amazing Heather Siebens aka @AliveinMe - In her own words....
TODAY IS AMAZING
Posted 9 hours ago
I wound up having weird seizures throughout the night. That is always blissful, when they can see the seizure-before you know!! Then come rushing in as if you are about to die!! Perfect time early early morning!! But any way-is a great way...
They came to talk. I was so blessed because my head was wakened by my nurse who had to give me a morning pill after all the chaos earlier, and check my BP etc before her shift ended. I woke up without a head THROB! Thank you all for your prayers!! Just after I was able to use the bathroom, I was up for the rest of the morning at 7:10-- in time to see my neurosurgeon come in thrilled with all going on.
He had them run that brain stimulation testing--BIG reason for all the depth wires in my brain. And it was to look at language-both reading/comprehending and very much able to read, fluently still. While they shut different parts off more... I had one odd reaction-nothing big... but my mind was all in tact, understanding, and knowing the words etc,,, but a flashing light would go off in my upper peripheral vision. Then one other at the end slowed some concentration... but otherwise ALL IS CLEAR that they are concerned about, to take out!
This has always been uncomfortable first having this first electrode surgery-- as for things in your brain is not normal.. but thru all your kind words, PRAYERS, and love-- I had an awesome day today!! Hardly any pain... to God be the Glory always. He knows the time-HIS TIME. And I sure praise Him.
They always want a couple more seizures for surgery-but they have so many of mine that it is a weird blessing. So few more nights of this wire stuff... then they will be resecting!! AMEN!
Love you all! All of you have been praying since Jan, 2009!!!! WOW--it is finally HERE! AMEN!!!
In His Love,
Heather Siebens @AliveinMe @EpilepsyCures
480-717-1018 (cell)
480-342-0511 (my room)
Mayo Hospital
5777 E Mayo Blvd
(RM 5W-11)
Phoenix, AZ 85054
Jesus...To you be all the Glory, Honor and Praise. May your name be glorified by our lives as we strive to walk for you...
This is getting exciting!
Until tomorrow...
AMAZING DAY..... JUST CAN SAY- PRAISE YOU JESUS!!
I wound up having weird seizures throughout the night. That is always blissful, when they can see the seizure-before you know!! Then come rushing in as if you are about to die!! Perfect time early, early morning!! But any way-is a great way... thru HIM!
They came to talk. I was so blessed because my head was wakened by my nurse who had to give me a morning pill after all the chaos earlier, and check my BP etc before her shift ended. I woke up without a head THROB! Thank you all for your prayers!! Just after I was able to use the bathroom, I was up for the rest of the morning at 7:10-- in time to see my neurosurgeon come in thrilled with all going on.
He had them run that brain stimulation testing--BIG reason for all the depth wires in my brain. And it was to look at language-both reading/comprehending and very much able to read, fluently still. While they shut different parts off more... I had one odd reaction-nothing big... but my mind was all in tact, understanding, and knowing the words etc,,, but a flashing light would go off in my upper peripheral vision. Then one other at the end slowed some concentration... but otherwise ALL IS CLEAR that they are concerned about, to take out!
This has always been uncomfortable first having this first electrode surgery-- as for things in your brain is not normal.. but thru all your kind words, PRAYERS, and love-- I had an awesome day today!! Hardly any pain... to God be the Glory always. He knows the time-HIS TIME. And I sure praise Him.
They always want a couple more seizures for surgery-but they have so many of mine that it is a weird blessing. So few more nights of this wire stuff... then they will be resecting!! AMEN!
Love you all! All of you have been praying since Jan, 2009!!!! WOW--it is finally HERE! AMEN!!! I even got an awesome text message from a dear soul in Canada who somehow found out about me!! WOW!! God works wonders EVERY DAY IN OUR LIVES!! I am so grateful to have found Him and always stick to Him. Not regret any of what I went thru, or go thru-- as for I found Him, clung to Him, and in deep love with Him--watching Him work all different miracles thru every challenge! All worth it every moment. He is God-- God is GOOOOOOD!! AMEN!!
In His Love,
Heather Siebens @AliveinMe @EpilepsyCures
480-717-0609 (cell)
480-342-0511 (my room)
Mayo Hospital
5777 E Mayo Blvd
(RM 5W-11)
Phoenix, AZ 85054
480-717-0609 (cell)
480-342-0511 (my room)
Mayo Hospital
5777 E Mayo Blvd
(RM 5W-11)
Phoenix, AZ 85054
1 Thessalonians 5:16-18 Always be joyful. Keep on praying. No matter what happens, always be thankful, for this is God's will for you who belong to Christ Jesus.
Blessings ALL!!
Heather's Journey - Day 8
Day 8 has been a pretty good day for Heather. She has been fairly active and the RN has not had to give her nearly as much pain medication as the last few days. Heather did have some pain tonight..there is a electrode on her forehead that is really hurting her. I guess the Doctors are going to reposition it tomorrow. Hopefully that will lesson the pain. They continue to strive to get her to seize and conduct some testing...The goal is to be ready for surgery on Friday. :( (AMEN-per Heather) We will just have to be patient and see what transpires.. Sometimes our wishes are not he same as God's wishes....He knows what is best for us! We have to just trust Him!
1 Thessalonians 2:4 Our purpose is to please God, not people. He is the one who examines the motives of our hearts.
I saw Heather post this tonight on Twitter and it rang something in my heart about the last week. Many of you may know my story, but I'm sure others do not. I'm not going to get into all the gory (only some-per Heather-he is dear!) :) details tonight..plus this blog is not about me..;) But I will share my story enough to tell you that I have not lived up to this verse in my life. My entire life I did everything I could to please people. Sadly, that meant many poor decisions which caused heartache not only in my life, but also those people I was trying the please the most. Heather has always preached that I loved her too much. That I needed to focus less of my attention on her and more on Jesus. Don't get me wrong...I love God..but at times I forget that He should be #1 in everything I do. Over the course of my marriage to Heather I have been on a journey...a different journey than the one Heather is on..but a journey none the less. Heather talks about how she welcomes her epilepsy because it has forced her to put God first...That is the amazing thing about suffering...why is it so much easier to come to Christ when we are suffering rather than when things are good? Why is it easier to pray and surrender in hard times?
Heather has been an instrument of God in my life. Through her. God continues to mold my heart and teach me life lessons. These lessons are continuing to be solidified this week. By witnessing others actions and their outpouring of love for my wife and our family and by experiencing the pure joy of being a part of her story...her journey...I am realizing first hand the power of putting God first in our lives and I pray you are as well. What incredible satisfaction to honor our Savior first! He will not disappoint us and He will also open our eyes to the secrets of joy in this life if we choose to put Him above everything else. By putting Him first..others are pleased...God stands for us and wants us to receive joy. He is a God of Love and if we "pay it forward" His love will spread like wildfire..it will consume us..and everyone who calls Him Lord and is in the path will be caught up in a journey of a lifetime if we allow Him to lead. This is the key to happiness in life. Love the Lord God will all of your heart, mind, soul...He will love us back.
Miracles are happening everyday...enjoy the journey.
Until tomorrow. @flyingchristian (Christian Siebens)
Colossians 4: 5
Live wisely among those who are not Christians, and make the most of every opportunity.
Live wisely among those who are not Christians, and make the most of every opportunity.
Colossians 2: 8
Don't let anyone lead you astray with empty philosophy and high-sounding nonsense that come from human thinking and from the evil powers of this world, and not from Christ.
Don't let anyone lead you astray with empty philosophy and high-sounding nonsense that come from human thinking and from the evil powers of this world, and not from Christ.
2010/02/07
Heather's Journey - Day 7
It's Superbowl Sunday! Not that Heather could care less...but I think there is some symbolism and irony in today. Congratulations to the Saints for winning their first Superbowl...job well done.
As exciting as the Super Bowl is I know there are many more important things in life than football. As Heather sits in her hospital bed she continues to remain upbeat about her present situation and positive about her future. Last night was a difficult night..so much so that Heather now has a dedicated nurse on call 24/7 for her pain issues. The Dr's want to help control her pain so they can begin to analyze her brain activity. Nothing further can be done until she has more seizure activity so a surgical gameplan can be developed. So as difficult as this is to write..please pray for seizures. Pray that they will identify the exact location that can be removed and pray that section is resectable without negative effects for Heather. With God all things are possible...we are confident in that.
As I was watching the Superbowl tonight..I contemplated about what a "Saint" really means...According to Websters Dictionary a "saint" is: "A person of great holiness". Although many of us have "holy" moments... The only person I know who of great holiness was Jesus Christ. As earthly sinners we are far from saints...however, through the amazing power, grace and mercy of our Lord we have the ability to put on Christ and be His hands and feet on this side of heaven. Our "gameplan" should be that of a saint. I know neither Heather nor I are a saint..boy do we have stories...:), but it is our goal to be more "saint-like" and that is only possible through the power of our Lord. Saints also usually have to go through pain and suffering in their life. Jesus said we must "take up our cross daily and follow Him"..Heather talks about the Apostle Paul and the fact that he had a "thorn" that he had to deal with daily in his life. That "thorn" is never really identified..but despite his thorn, he impacted the world for his Savior. Heather wants to be a Paul...and she is willing to live with a thorn if that is the will of God.
I know that Heather truly appreciates the amazing encouragement and outpouring of love from so many across the world. Please continue your encouragement. It means the world to both Heather and I...But also please join us in playing the game...develop your gameplan...join the team and do your best to become a saint. Individually we can make some good plays, but together we can win the SuperBowl!
Until tomorrow...Blessings from Heather and I. We love you.
Day 6 - Heather's Journey Continues...
The weekend has arrived, but to Heather the days are beginning to run together. She usually keeps the lights off and the shades pulled to minimize her headache activity. It seems to me that she is beginning to get anxious for the pain to lighten up. Who would blame her! She also is complaining of a few issues that begin to occur when you are in bed and not moving for so long. But she remains strong, positive and motivated to do everything possible to make this surgery as much of a success as possible.
Today she was visited by a number of friends and relatives...When I arrived the room was full of flowers, cards, books, stuffed animals...she is fortunate to have so many people that love her..I know it helps to have people visit to pass the time and provide encouragement..but can cause headaches to increase..but don't be fooled, she is a trooper and would never pass up the opportunity to spend time with all!
Please pray for her as the Dr's begin to remove more of her meds and work to begin their testing...I hate to think of her having seizures, but I know this is a required step..so she is in the hands of Jesus. I know He will watch over her and protect her during these difficult days. Also..please continue to pray for her to be delivered from so much pain. I just got a text from her saying she is throwing up again due to the pain...I feel lost and don't know what to do other than lean on Jesus and all of you..she needs your prayers and we thank Jesus in advance for listening to the prayers you are lifting up on her behalf.
I know tomorrow will be another day of visitors..I hope it does not stress her to much. Please watch the videos Heather has been posting..she loves sharing pictures and music which are meaningful in her life. I know it is her prayer that through her life and the life of our family, others will discover the wonders of a life in Jesus..and even through her pain..she is doing her best to further His kingdom.
I couldn't love her more..or be more proud.
May you all have a blessed Sunday celebrating our Savior!
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