Wednesday, July 23, 2014

Paved Pathway and A Surrendering Heart (WARNING: LONG POST)

I have to start by letting you all know how appreciative I am by all your responses from our last blog post.  It means the world to us to know that so many of you are still praying for our family and still walking this journey with us even after all this time.  Thank you so very much.  It's been a long month as we have searched, begged, and prayed for answers and wisdom regarding Adam.

Before Adam really began spiraling backwards and really before Adam's first of 11 hospital visits since the end of May, God woke me up in the middle of the night.  He woke me up with a citation of a very specific Bible verse.  I was too tired to look it up then so I told God I would write it down and look it up in the morning.  That's when the "nagging" started, I couldn't even go back to sleep without hearing the citation.  You would think that after all God has done for me and His faithfulness I would have woken with enthusiasm to hear what He was wanting to tell me but instead I argued with him for nearly 2 hours before complying.  Of all the things that drive me insane as a mother it is a lack of listening and being disrespected.  (Ask Mackenzie, she will tell you).  Yet, here I was doing just that to God. 

Not only that, but then I became just like an Israelite grumbling my whole way out of bed, down the hall, and into the living room, until I opened my Bible and saw the Word God was giving me... "They will feed beside the roads and find pasture on every barren hill.  They will neither hunger nor thirst, nor will the desert heat or the sun beat upon them.  He who has compassion on them will guide them and lead them besides springs of water.  I will turn the mountains into roads, and my highways will be raised up."  Isaiah 49: 9-11

After getting this word I was excited to see what God had planned next for Adam's recovery.  I couldn't wait to see what He was going to do. About a week later Adam ended up in the hospital and we found out about his missing bone flap and shunt problems. I realized it wasn't "what He was going to do" but what He was doing... He was preparing me.  This word has sustained me through this time, it's God's promise that He is continuing to go before us and even in this season of this journey He is paving the path.  As we continue to press on we can see Him at every corner, making a way through the impossibilities placed before us.  Trusting God is a choice and we continue to place our needs at His feet and into the palm of His hands and He continues to provide ALL we need each and every moment.

As I mentioned in the last post Adam has been progressively sliding backwards, more physically speaking but a little cognitively as well.  The most difficult change has been Adam's coordination in everything he does, from standing to swallowing.  He has been so unsteady on his feet, he has choked to the point of needing me to preform the Heimlich Manuver, he falls over just standing, he has multiple seizures, and the list goes on.  The scary part is he keeps falling and with no bone flap to protect his skull, it is incredibly dangerous and scary every time he falls.  He has fallen 18 times in the last month and sometimes he could just be standing and then all of the sudden for no reason fall to the ground.  Sometimes Adam understands the need to keep safe and will use his wheelchair or wear his helmet and other times he has no idea or understanding of his need to be safe. The following story is one to help educate those we love and the community...

A little over a week Adam, Mackenzie, and I were on our way to the hospital to meet our new niece/cousin.  Right before pulling into the parking garage, I explained to Adam that we were going to meet our new niece Abby.  I handed him my phone so that he could watch the video of his occupational therapist telling him that when we are out in about he either needs to wear his helmet or be in his wheelchair to keep him safe from falling.  When the video finished I asked him which he would like to do, before I really parked the car he was getting out of the car and almost at a run taking off.  We were not in a familiar area or even near our home.  I just started to follow Adam and quietly and gently tried to redirect him,  When agitation hits, I don't tell Adam what to do or what he needs to be safe because it makes it worse.  After I realized he wasn't going to be redirected we just kept walking, and we walked, and walked, and walked.  A little bit along the way I would try to calmly redirect or ask Adam where he would like to go but it would only push him to walk faster and further.

Most of the time we walked in silence and used Adam's vision deficits to stay out of sight.  But after nearly 2 hours of walking in 90 degree heat with no fluids, I made one more attempt to distract him, hoping that he would want to stop and grab a quick drink, but instead he pushed me into oncoming traffic.  His brother Tristan showed up to try to help too, but Adam was so agitated, and at this point probably effected from the heat Adam stepped into oncoming traffic at a major intersection.  Luckily cars were able to dodge him and Adam was safe, but at this point I didn't want Adam to jeopardize his safety anymore... I called 911.  This is where the matters were made worse and where our community needs more training and understating of those with disabilities, especially cognitive disabilities.   I have been trained in brain injury de-escalation, first rule, stay calm and controlled of voice and body language. 

(This story is not to be negative or even put down our those who serve our community, its' only to raise awareness.  We have benefited from many of those who serve our community and have come to our rescue when Adam has needed medical attention and we are grateful for their help.) 

After speaking to the 911 dispatcher and explaining the situation, I reiterated over and over that my husband has a brain injury and that whatever officers that arrive need to be calm and Adam would remain calm, but if they were aggressive in any way it would make matters worse.  I vent then explained it to the first officer who arrived, he heard me, but didn't listen.  He instantly put hands on Adam and pulled him back which caused Adam to fight.  He did nothing to calm Adam, and by the time the other officers, and paramedics arrived Adam was fighting pretty hard.  I kept trying to talk to Adam and to those around, explaining that everyone must remind calm and collective but it just didn't work.  At that point they didn't give me a choice or allow me to be Adam's voice (like I have the legal right to do), they told me that they were taking Adam into involuntary custody. They tied him to a stretcher and off we went to the hospital.

The officer explained to Tristan and to myself that they will only take so many phone calls from a family in a situation like this before they bring it to the court system and have them removed and placed in a group home.  As we watched the situation unfold and after talking with the officer who told us this information, we now don't feel like calling 911 in a situation like this again would be helpful but instead as this has proven, it was more detrimental.  What our community needs is not just awareness but education on de-escalation.  It. Needs education on how to come along side the family and help, not escalate.  Threats that the officers made that would work on the normal population only drive the agitation in a brain injury and make it worse. 

God continued to go before us in this situation, the hospital we were taken to, Adam had been in the ER there before for having multiple seizures in one day.  We have only been in this hospital once, as most of Adam's care is handle at a larger hospital.  God graciously arranged for the nurse and doctor who cared for us before to be working that day as well as remember our family.  Both the nurse and the doctor were frustrated that Adam was restrained and asked if I felt it necessary.  I said no and said that I thought it was making it worse.  Together we came up with a quick discharge plan of care... after 2 bags of IV fluids and rest we were on our way home.  After about a bag and a half of fluids Adam looked over at me from the hospital stretcher and asked if I needed a hug.  Having completely no idea the ordeal we had just went through.  He got up and hugged me, wanting so badly to comfort me.  Adam is VERY intuitive to me and knows sometimes before I do how I am feeling.  I love this about my man!  He loves me so very much and I too love him with more than words could ever describe.  We are bonded at the soul in only a way that God can do.

Well, as I was sitting here typing all of this, I can't very well say that something needs to be done, and education needs to happen if I am not willing to do something about it.  So.... After talking with Adam's parents and sharing my thoughts and ideas we are going to be holding a community education event for traumatic brain injury!  More details will come, but we are looking at tentatively holding it on Saturday October 25th at Adam's family's farm in Newberg, OR.  We are looking for companies and or families who would sponsor the event, this would allow us to bring in some community experts as well as some needed materials.  Please let me know if this is something that you or your company could do.  We would like to open this up to the community without having to charge.

ON ANOTHER NOTE... I know so many of you have been praying for us as we have had some really huge decisions to make.  I can't thank you enough for your encouragement, your love, and your prayers.  Thank you, thank you, thank you!!!

We (Adam's parents and myself) have gone back and forth on what we should do.  Since writing last Adam has been falling so much and when I called the neurosurgery clinic at UW, they said it was a neurology issue and when I talked to neurology they said it was a neurosurgery issue and then the nurse from the clinic said that maybe I was on caregiver burn out and just paying attention to things differently now.  I'm pretty sure, my husband falling over with no bone flap in his head is not just an issue I would have ignored.  With all this confusion and mess their solution is that I take Adam back to the ER, we have been in the ER every week and nothing is being done.  Nothing was solved and none of my questions were being answered.  I was desperate for answers, specifically ones that I had about the benefits and risks of the surgery verses not having the surgery and the risks involved with that. 

The Lord has graciously continued to build Adam's team and I stepped back and made some phone calls to North Carolina.  We met a neurosurgeon at our church in North Carolina and he extended his help whenever we needed it.  I called him with my questions and he was able to help aide us in getting other opinions.  We were also able to speak to Adam's neurologist at University of North Carolina, who spent nearly an hour on phone with me answering my questions and helping guide us down a path.  She too strongly suggested as did our friend from church that we seek multiple opinions.  We did just that and after researching and researching we were able to meet with a neurosurgeon who was finally able to connect the dots of all that has been happening to Adam and explain why AND answer all my questions!  After a nearly 4 hour appointment/evaluation, Dr. Newell, was able to answer all of my questions, explain and show me why the benefits and risks of surgery will be worth it for Adam and how it should increase his quality of life. ANSWER TO PRAYER!   I was able to see what was missed in previous appointments, such as Adam's brain shifting from midline and how taking the pressure off the left side of his brain will measurable and significantly help Adam in his recovery. 

Another blessing... is instead of 3 surgeries Adam will only need two and they are going to try to complete them in one day! One open and shut!  The other surgery he no longer needs has been replaced by imaging and scans.  As I have mentioned before there are some risks but we are placing those risks and concerns directly into God's hands.  Trusting him completely.  To be honest this is an hourly task for me right now.  Before when Adam was having these kind of surgeries it was so early on and the trauma and shock were still so real, I didn't really understand or know the significance of  what the recovery would look like.  Now I have a much better idea and I am so incredibly scared.  When getting all of my questions answered, I didn't know whether to be excited or to cry... so every day I am a little excited and I cry a lot.  Adam is in God's hands, He know how much I love him even when words can't describe, yet God loves him more.  This is what I am holding onto and reminding myself daily.  So as you pray for our family, Adam's surgery is scheduled for August 13th. 

We have already began the preparation for surgery, Adam went through all the scanning and imaging yesterday. We are preparing our home and getting things in order for the recovery process.  I am trying and working on spiritually and mentally preparing myself for the days to come.  I will work on updating more consistently as we walk this season of our journey.  It's been a little hectic with all of our appointments on top of therapies but I will do my best to keep updates posted.

Thank you all for your continued support in our journey, we ask that you please continue to pray and ROOT for Adam!  Enjoy the family update in the pictures below...

4th of July in Oregon means rodeo time!  St. Paul PBR!

Mackenzie and I enjoying the rodeo!

A girl and her horse!

Happy 4th of July from the Root's!

Mackenzie riding in the 4th of July parade downtown North Plains, OR
No matter where you look on the farm, the view is always amazing!

Adam hitting a bucket of balls with his brother Ben

Adam and Ben

My man, my kiddo... my life!

This girl got her braces off for her birthday, thank you Dr. Ritter and Dr. Shields, she loves her smile!

We have been enjoying the local single A baseball team here, our house is too hot in the evenings and no better way to cool off then to watch a baseball game!
Adam and I enjoying an evening of baseball
7-11 meant FREE SLURPEE 

Meeting my niece Abby for the first time!  It was love at first sight!

 Adam meeting Abby for the first time
According to a study 20 seconds of hugging can lower blood pressure and after this time elapses, levels of feel-good hormones such as oxytocin increase, while the amounts of stress chemicals, including cortisol, drop. (Adam's hugging his mom)
Mackenzie's heaven on earth.

Love this girl!

Fun with the girls, my sister-in-law Shandal and Adam's cousin Hailey
For Mackenzie's birthday she requested corndogs (I never buy them so they are a treat), to our surprise Grandma Ethel had never had one.

Mackenzie's 14th birthday!
Look for another update soon and please, please, please pray for our family... this is truly our greatest need.


Unknown said...

Love you all tons and am praying for wisdom, hope and strength for every moment for your day!

Katie Salberg said...

Thanks for the update. Will continue to keep all of you in prayer. Adams surgery date is on my calendar. I am so thankful for the strength the Lord has given you and the beautiful love you have for your husband. You shine girl! Love you, Katie

Sheri Halberg said...

Hi dear Amy -

I have August 13th on the calendar to pray! I can't even begin to know what you all have been through - but we serve a Mighty God who can turn things around and bring joy from your pain. I wish I could take all of this stress away for you. And - tell Mackenzie that her beautiful new pearly whites look great!! :) She's becoming a lovely young lady.

Sending you warm hugs, love and lots of prayers ~ Sheri

Anonymous said...

I will continue to pray for you, Adam and Mackenzie as you follow the path that the Lord has paved for you. Though no one but He can truly comfort you, please know that there are plenty of us praying and believing that He will comfort, guide, and lift you up EVERY time you need it.
God bless you in your decisions, and I pray for amazing results from this surgery to come.
Terri Watson (friend of Cale & Kathleen's)

Anonymous said...

Oh, my dear sweet Amy, My husband has been military all of our 36 years. Sooo, I tend to think in military terms. There is a reason few are called, "Special Forces". They have a training far beyond the Regulars. They have been chosen, and are trained in special skills and endurance. They are called when the Regulars need "Back Up". You, Dear One, are in the "Special Forces" of Father's Army. As a chosen one, you are having rigorous training far above and beyond many of the rest of us can imagine. You are seeing glimmers of Father's plan. He will unfold the rest as needed.

Some of the above, if not all of it, you already know. I just KNOW the harder the training, the mightier the battles, EQUALS the greater the REWARD in the end. Father intends to reward for every single thing you have so valiantly gone through. Even more than any earthly commander, He will reward you. Some now, yes, I will be cheering for what He does in The New Earth.

I had to laugh a little, when you talked about being that disrespectful kid. I saw myself SOOOO clearly. I am claiming Isaiah 49:9-11 for my situation some of my family and I are going through right now. Thank you for sharing those verses. Like You, I choose to TRUST. Not always easy, BUT always GOOD.

I love you, and am leaving you and your sweet family in Father's more than capable HANDS.


Mackenzie, While always sweet, your smile is even more BEAUTIFUL now.

Anonymous said...

Dear Amy--
Thank you for sharing with such openness all you and your family are experiencing. It does so much help us to know how to pray specifically. I totally agreed with you about the general public needing more education on people with brain injuries of all kinds. People truly don't understand and do often make things worse or don't do anything and just stand back and watch. After seeing all my parents have been through the past nine years since my father's massive stroke I have become so much more "aware" of people in my everyday life I may pass on the street or run into that have varying disabilities. People need encouragement, an understanding smile, a kind word or even help with a door!! I am also so much more aware now of all the caregivers out there that are lovingly taking care of loved ones with disabilities and sickness year after year. They need prayer and support. I believe one of the most challenging things for my mother in caring for my father has been in getting answers to her questions when she asks the medical staff. It must be a common problem people have. There is often much confusion with this! Anyway, our family will be in prayer for you and yours. It is a hard, hard time and I am so sorry for all you and your family are going through. May the Lord strenghten you day by day, moment by moment and carry you each step of the way.
In Christ,
Emily J. (Sanford, NC)
P.S. I think my daughtet and MacKensie are "kindred spirits" in their love for horses. My daughter has been in riding lessons gor three years now. Loves to jump!

Vicky Scott said...

It is so good to see you posting again after so long. I am so very sorry you are walking through this and know how very blessed Adam and his family members must be to have you as his wife. I do not know if it is even possible but would love to talk to you sometime. I am not sure if you remember that our son is a severe TBI and has not had a bone flap for almost seven years. I know you have not posted all that you have heard but your research would be invaluable to me. I know you have much on your hands. If ever possible, I believe you would have my email address.
Vicky Scott