Saturday, September 13, 2014

ROOT ROOT... It's Discharge for us!!!

The last six weeks of living life confined inside the walls of hospital may have been some of the most humbling moments I may have ever experienced.  What a journey we have been on.  Surrounded by so many people who are just beginning their own journeys and hearing their stories has been both heart breaking and an honor.  Heart breaking because I can honestly say I know the pain maybe not the exact pain but one so very similar, I know the difficult road that comes with a journey, I know the grief from life changing in an instant.  BUT I also know and can speak from experience there is so much joy in the journey. I was just sharing with a family last night how much easier I laugh these days then before Adam's injury.  When life hands you an unexpected journey it really puts life into perspective.  Moments and memories are never taken for granted but celebrated and cherished.  Hope is never lost, never crushed, never far... because Hope is not a feeling, Hope is alive, it's Jesus. 

My prayer is that these families that we have been surrounded by, the families that have graciously shared their hearts with us will see Hope like they may have never seen it before.  I pray that all of us on journeys will seek to find Hope from Christ and Christ alone and not from the doctors, therapists, or anyone else.  May we all experience hope like we have never experienced it before.

Romans 15:13 (AMP)  "May the God of your hope so fill you with all joy and peace in believing that by the power of the Holy Spirit you may abound and be overflowing (bubbling over)with hope.

One of my all time favorite worship songs is In Christ Alone...

In Christ alone my hope is found
He is my light, my strength, my song
The Cornerstone, this solid ground
Firm through the fiercest drought and storm

What heights of love, what depths of peace
When fears are stilled, when strivings cease
My comforter, my All in All
Here in the love of Christ I stand

The song continues on and I encourage you to listen to it, but I just love these lyrics.  Walking this journey for 4 years now.  We have experienced ups and downs, highs and lows, moments of despair and moments of unexplainable peace.  My feet have wavered from time to time, my eyes have wondered off the cross, but God has remained the same.  Faithful and true, comforter and peace.  God is continuing to show me His unfailing love for me.  He has been my encourager, my only source of hope.  And as we prepare to start yet another chapter of this journey, I pray that my feet will be planted firm on Christ alone,  that I will never once think of our situation as hopeless but hopeful, HOPE FULL!  Pray for us please.  While we are not starting from the beginning and our journey is not new, we are facing challenges very similar to what it once felt like at the beginning. Pray specifically against discouragement.

Praise God we are not alone, that He has been guiding and directing our steps and Adam's care, that He has supplied our needs and provided in ways that have been truly unfathomable.  We are continuing to trust Him as we embark on our next steps.

Today we are celebrating DISCHARGE!!!  When in a hospital setting this might be my favorite word!  Nearly 6 weeks in the hospital has been long enough!   We're hoping to break out of here sometime before lunch. 

We are praising God for His provisions once again!!!  Adam was approved for Rehab Without Walls!!!  This will be the first time ever that we will have help in our home with Adam.  We have very strict guidelines in taking Adam home and they will be very confining, but having support in the home even for a few hours a week is going to be amazing!  Adam is very sensitive to stimulation and going out in public as been posing some challenges.  Adam's doctor is requesting for every hour of stimulation, whether in the house or not Adam will require 3-4 hours of quite and rest.  His brain is just really sensitive and unable to process too much at one time while it is continuing to heal from all that it has been through.  It is also recommended that we limit our outings to appointments only and that Adam takes the next 4-6 weeks to be at home with controlled stimulation.  Pray that this won't be challenging for wither of us but a time of peace and reprieve, of healing and joy unspeakable.  Thank you for praying for us and for walking this journey with us, we are so blessed.

Tuesday, September 9, 2014

My Marriage, My Man... God's Plan

What a privilege it is to stand by my man.  To be one as we walk the difficult road before us, to united by God's grace and love.  My role as a wife is different than most, I am thankful daily for Adam, even when he is agitated and all that seems to fly out of his mouth are 4 letter words... I am thankful that he is speaking... perspective.  I have to keep my eyes on the blessing God has bestowed upon me so that I won't get lost in the longing I have for my husband to be what he once was, but to see the gift he is and the gift we have been given to share this moment together.  It's easy to get caught up focusing on what I don't have or wishing for something different than what God has given me, it takes practice keeping my eyes fixed on God and recognizing that the life and journey I am walking is because He has allowed it and therefore is orchestrating all things for His good and for His glory.

I challenge all of you who are married, the next time you might be temped to be upset, mad, or angry at your spouse try to see what a blessing they are.  That you both have the ability to share life together, conversations, laughter, that you can create memories, share in life's celebrations and sorrows.  Ask God what He is teaching you about Him through your spouse.  God is teaching me so much about who He is and His characteristics through my role as Adam's wife. I have so much to be thankful for and I am incredibly blessed that I have the privilege to walk daily with my maker, allowing Him to ill any gaps in my marriage.  God has continued to shape and mold Adam's and my life, just because Adam may not remember being married, or even me as his wife, it doesn't stop God from working and knitting our marriage together not just our lives.

We are continuing to rejoice as we see God's hands throughout all of Adam's recovery!  It's been a successful week in rehab for Adam!  It's an incredible blessing to see all the hard work going into Adam's recovery both from Adam and from all those who have been working with Adam.  Thank you Jesus for giving Adam strength and for your provisions around Adam's team!

It's so awesome to be working with a team that will continue to follow Adam as we discharge.  It's helping as we develop a plan of care for Adam and not just a "survival plan".  Adam's physiatrist sat down with me multiple times this week and we worked together to determine a long term plan of care as well as played through some scenarios and how best to treat Adam if these situations should arise.  For example if Adam should become agitated beyond my ability to stay safe or to keep Adam safe, she and I worked on a plan of action.  We came up with a plan to continue to check with neurosurgery to keep an eye on Adam's shunt levels and making sure the pressure in Adam's head is maintained at a safe level. 

Adam's doctor also listened to my concerns about Adam's agitation, I believe he gets most agitated when he can't remember specific things about his life.  Most of his agitation is in response to his memory loss and confusion.   Awhile ago, before we switched physiatrists, I had asked about certain drugs that stimulate the production of acetylcholine which our bodies make naturally but those with dementia or Alzheimer's it produces at a much lower rate and those with brain injuries similar to Adam's it suppresses the ability for his brain and body to make enough if any at all.  When I had asked about this awhile ago, Adam hadn't been stable enough with all his seizures and other medical issues that it wasn't a possibility to try something like this.  Since Adam is inpatient there is no better time to try... the other blessing... ADAM HAS BEEN SEIZURE FREE!!!!!!!!!!!!!  If Adam's seizures were going to continue with the fierce intensity that they had been he most likely would have had seizures right after surgery and with multiple surgeries he would have had a greater risk.  This isn't to say he won't ever have another seizure but continuing to maintain the pressure in Adam's brain this is helping to keep the seizures under control.  PRAISE THE LORD!!!!!!!!  With this awesome and exciting news we also have been able to work Adam off one of the 4 medications he takes for seizures.  This is only the beginning, hopefully we will continue to work him down to just one seizure medication.

One of the goals we have been working on while Adam is inpatient is how to work through the agitation and still be successful in getting out in the community.  This last year for us has been extremely isolating. We have been working with the doctors, therapists, social worker, and psychologist to come up with a long term plan as to where our family will end up and evaluating our support team and our quality of life.  This has been difficult as we have been so blessed with amazing support and incredible health care but the two don't always come in the same package.  So it looks like we will have more decisions to make.  Placing yet another life altering decision in the hands of God.  Pray for protection and guidance as we make this decision.  We won't be changing locations right away, as Adam still has quite a bit of recovery ahead of him.

We are hoping for a discharge date of next week sometime, but that will depend on what will be available to Adam as an outpatient.  The team here believes Adam needs intensive therapies and care to continue.  We have contacted a program called Rehab Without Walls, we are hoping our insurance will approve this as an option.  RWW will provide therapists, nurses, and other support teams to come into our home and work with Adam in his environment.  This would allow him to become stable at home before beginning outpatient therapies here at Harborview. This will help with the transition and with the stimulation issues that we are seeing arise in Adam.  RWW is a short term transitional option for us pending insurance approval.  I would love for God to provide RWW as long as God sees fit for Adam and not what insurance decides is best.  God has been incredibly faithful at providing all our needs and we are continuing to do trust Him.

Please pray for Adam's cognition to improve beyond what limitations man has put on him.  We know Adam's true physician is God and God alone and there are no limitations as to what He can do and is doing in Adam's recovery.  Pray for Adam's memory to be restored fully.  Pray for me and our family, there is more going on than I have the freedom to share and I could really use prayer.


Tuesday, September 2, 2014

God Meeting Us Right Where We Are

My heart is so heavy and for so many reasons.

Often I don't understand all that we have to face in a day, I don't understand the mounting stresses and frustrations that have complied on top of Adam's injury.  God has asked only of me that I trust Him and place my trust in Him alone.  That is all I can do right now, because nothing about life in this moment makes sense to me. All that I am processing through both in Adam's recovery and in day to day life truly makes me feel like I am about to be crushed under the weight of it all.  But God is bigger and He is my strength and I am keeping my eyes fixed on Him and not on all the circumstances around me.

While I may not understand why we are facing all that we are facing, God has met me right where I am.  My time with God lately has truly been some of the best I can remember, He is truly showing me how sufficient His grace is.  He's protecting me in the palm of his hands.  He is walking with me through some difficult circumstances and pulling me closer to Him in the process.  I am so incredibly amazed how closely He is walking with me. 
The last couple of days I have spent processing all that has been going on.  I have spent time meditating on God's word and praying for direction and protection.

At the end of last week I learned that the doctors believe Adam is suffering from a brand new brain injury.  They believe that the trauma from the 3 brain surgeries, the complications of the fluid and air that built up on Adam's brain, and the 4 shunt and pressure adjustments was just too much for Adam's already fragile brain to handle.  This has resulted in new injuries, new deficits, new complications, new challenges, and the beginning of a "new normal". 

Adam has had a significant increase in agitation and has been unable to manage stimulation well.  This has been an expected turn in his recovery.  When his injury first happened I had prepared myself for a change in his personality based on what the doctors and therapists had educated and trained me.  I wasn't prepared for it to happen all these years later.  It hadn't crossed my mind that it could happen now, years after his injury.  But as a result from this new injury we are seeing what looks like a change in his personality and ability to cope with stimulation.  I am praying this is temporary.  Listening to Adam swear in anger and frustration over and over again all day long is very difficult. Thankfully the Lord has sprinkled some relief here and there.  Yesterday Adam had a great day, and was easily distractible... today, not so much.  There is no rhyme or reason as to what triggers his anger. 

After talking with Adam's doctor this evening she was realistically said that there is no way to know what Adam can and will overcome.  He has already come through so much and much than he was ever expected to.  No one can look at Adam's chart and read through his medical history and not see that Adam is here because God is working in Adam and not by chance.  Medically speaking most doctors can't understand how Adam has survived all that he has.  Adam has survived his initial injury, 14 brain surgeries, 2 life threatening infections, 5 craniectomies, facility related medication mishaps, a silver alert, and probably more than I can recall.  It truly is by God's grace and purpose that my man is still alive.   I can't wait to see all that God has planned through for Adam. 

One thing I know for sure is God has definitely had purpose in our time here.  From conversations with the staff to Adam's roommate.  With permission I am share this... Adam's roommate is a homeless man who truly has been given a second chance at life.  We have not only been able to live our faith out, but share it as well.  The last couple nights as the lights have been out, he has been discussing the changes in life that he wants to make and I have been able to share God's love, explaining, that God wants to give the gift of His grace through forgiving his sins.  I told him there is nothing God can't forgive.  I have loved the opportunity to talk about Jesus and our faith, it's nothing short of a divine appointment.   Join me in praying for this man's salvation and for his eyes to be open to God's purposes and plans for his life.

Matthew 5:14-16 Message "Here's another way to put it: You're here to be a light, bringing out the God-colors in the world.  God is not a secret to be kept.  We're going public with this, as public as a city on a hill.   If I make you light bearers, you don't think I'm going to hide you under a bucket do you?  I'm putting you on a light stand.  Now that I've put you there on a hilltop, on a light stand -- SHINE!  Keep open house; be generous with your lives.  By opening up to others, you'll prompt people to open up with God, this generous Father in heaven."

PS:  Mackenzie had her first day in high school, please pray for her as she walks through this time, and especially because we don't know where we will end up through all of this.  I hate the thought of moving her around in high school, but all of this is in God's hands.  We will continue to trust Him for guidance and direction.