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.



Katie Salberg said...

Amy, You are such an inspiration as one who keeps her eyes on the Lord. That's really what it's all about. I know it's not always easy, and can be a battle to do so, but, girl, you are more than a conqueror!!!
Sending love,

Pam said...

Such courage, hope, and determination in your words but most importantly in your actions. You are truly a Proverbs 31 woman. "She is clothed with strength and dignity; she can laugh at the days to come. She speaks with wisdom, and faithful instruction is on her tongue. She watches over the affairs of her household and does not eat the bread of idleness. Her children arise and call her blessed; her husband also, and he praises her." ~ Proverbs 31:25-28

Prayers and blessings for all of you!

Beth said...

Dear Amy,
Your words slay me!
I have followed your Blog and prayed with tears and HOPE for your family since a friend shared your story early in this journey.
But I have been silently reading and praying without comment to you...I am a stranger.
YET, I am a SISTER with you sharing our Abba Father's strong, merciful Lap...held between His Shoulders with you. There is room at The Mercy Seat for all of us together!
KNOW! Just KNOW that there are many of us armed and bonded with you in Christ in this HARD, DIFFICULT, UNCERTAIN JOURNEY....Family!...we go together!!! You are not alone!
And especially for sweet McKenzie as she navigates this equally strange time as a Stranger in a Strange Land....JESUS is with Her!!! Father, send her a special BEST Friend who LOVES YOU and shares all the girlish joys and struggles of HIgh School years! A Friend for Life...a Kindred Spirit for NOW! WOW McKenzie with Your Presence!
Praise YOU, Sweet and STRONG Jesus! Amen!

Anonymous said...

Dear One, I seem to remember someone saying You, more than anyone, would know better than to say "Final Move"...or something like that. Aren't we glad Father directs our steps and KNOWS the plans He has for us.

I love you, and find great JOY in trusting Father for you and your sweet family.


Anonymous said...

Hold her and steady her, Dear Jesus! Bring your healing touch on her dear husband...restore to him that which seems lost. Surround Amy with your perfect Love, Peace, and Wisdom. Hold her ever so tightly and let her know how much you love her. Be her all in all this day and forever more. Amen.
Love to you,
Emily J.