Thursday, June 12, 2014

Choices and Trust

It's been so long since I last posted that it took me awhile to even remember my log in information... that is an "oh dear" moment if I have ever had one.

Thank you to those who have been faithful in reaching out to me in the last few months when I have been on a very unexpected hiatus from blogging and updating you all on the progress our family continues to make in this journey.   A weakness for me is responding, our days are full and I am not always good to respond but I am encouraged by so many of you and your faithfulness to pray for us and for my man! 

In the past months, we have laughed, celebrated, cried in pain and in joy, we have struggled through discouragement, we have clung to hope, but mostly I have spent a lot of time on my knees before the Lord.  These last months have been very difficult emotionally not just for myself but for all 3 of us battling and struggling through this journey in our own different ways.  Updates will come but that is not my intention in this post.  We are in desperate need of prayer for decisions that have to be made.  So this post will be mainly what is currently taking place and will mostly be related to Adam's recovery.

I have spent much of these last months wrestling with God about the 3 most important things, my faith, hope, and love.  I am weak, discouraged,  weary, and worn by this journey.  If hope was a feeling I would "feel" hopeless, but I know hope is living, hope is God and it is ONLY God.  I remind myself that God is with me and therefore I am not hopeless.  It is through Him living inside me, that allows me to love through this.  I don't often feel like I have much to give.  My faith is weary, I am holding onto faith clinging to it as if my life depends on it, because it does.  I believe in God's promises and I know them to be true, right now knowing , feeling, and believing all feel so separated.   I can tell myself I know something and in my head I know it, but my heart, my heart struggles and feels the pain, the sorrow, the weariness.   I haven't blogged because it "feels" like I have nothing left to give when I am struggling to keep breathing with every breath I am given.  But that's a lie.  A lie the enemy has used on me for too long now.  I might be weary, I might feel discouraged, but God, the Spirit inside me isn't finished yet.

Sharing this is me sharing my heart, it's me being vulnerable, not faithless, not hopeless, and not depressed, it's just me, my heart, and what I know God is calling me to be vulnerable with. 

We all face trials of many kinds, from broken relationships, infertility, loss, illness, and many other circumstances.  Our trials are wrapped in different packages but the lessons we learn from them often look and seem similar... because no matter what it comes down to trusting God NO MATTER the circumstance.  It's a choice to believe God and His promises for hope and a future, for restoration, for being our comfort, for being our refuge, for providing strength, for knowing His grace is sufficient, and it's a choice to cling to the truth when the lies want to bring discouragement and the "feeling" of hopelessness.  I am choosing to trust God no matter the outcome, no matter what we come up against, no matter the challenges and no matter the difficulty... I TRUST GOD.

As we are facing new challenges and difficult decisions, I TRUST GOD, and I trust that He has called many of you to pray with us and for us as we continue to put one foot in front of the other during this season.

 Psalms 119:114 You are my refuge and my shield; your word is my source of hope.

Adam has been sliding backwards, its been a slow progression with many symptoms and it's taken awhile to link some of the pieces together.  Adam has been in and out of the hospital since March for many reasons, and as we collect all the reasons several factors have come up... First, Adam's shunt was draining off too much fluid which was causing some severe headaches, dizziness, balance issues, speech impairment, seizures, and overall an increase in being disorientated.  What led to us realizing his shunt was over draining was a sinking in the side of his head and his eyes were beginning to sink inside of his head.  What was once a small depression in the side of Adam's head grew to a large concave that I could fit my entire fist into.  A CAT scan showed that Adam's body reabsorbed his bone flap.  (A bone flap is Adam's skull that was removed to relieve pressure from his brain and the but back on once the pressure was gone). So basically Adam's skull was reabsorbed.  When talking with the neurosurgeons out here they told me that this only happens in about 3% of adults.  As of right now there is nothing protecting Adam's brain other the skin on his head and God.

When we were in the ER and talking with the residents of neurosurgery they said that they would work with plastic surgery and build Adam a synthetic bone flap and put this in place of his skull.  And from what they have seen before Adam would begin to feel better as this would potentially help to relieve some of his symptoms.  Key word: potentially.  Finally, I thought we had some answers and that there might be light at the end of the tunnel.  We were all preparing ourselves for the surgery and gearing up for the recovery.  After we left the ER we were told we would hear from the neurosurgery attending doctor and begin to make plans to go forward.  Just this last week we met with the neurosurgeons to discuss Adam's surgery and what it would look like.  When talking with him we found out it's not just one surgery but several, it would require 1-2 surgeries to get the skin that has attached itself to Adam's brain tissue to separate and it would be quite a process to stretch Adam's skin so that it would come together and close over the new bone flap.  It would be another surgery to insert the bone flap and enclose it.  In a perfect world this would be it, but since Adam has had multiple cranioplasty surgeries all which have caused severe life threatening infections in Adam they reminded me that any infection would require 2 more surgeries.  Because if there were to be an infection, they would have to take out Adam's shunt, clear the infection, and place a new shunt in. 

Psalms 56:4 I praise God for what he has promised.  I trust in God so why should I be afraid?

All in all this is extremely invasive and risky, so much so that the neurosurgeon we met with said he wouldn't touch Adam.  Adam was too risky of a case with not enough potential of improvement to proceed forward.  He told us to follow up with the trauma team and see what they would recommend.  Because the danger of Adam falling is real and right now there is no protection for his brain.  We are waiting for our appointment with the trauma team but no matter what we face difficult decisions how to proceed forward... do we take the risks, trust God, and hope the surgeries would bring forth healing, protection, and relief from the symptoms Adam has been fighting or do we continue trusting God moving forward but without any surgical interventions and at the risk that Adam continues to decline. 

Psalms 41:3 The Lord nurses them when they are sick and restores them to health. 

There are many other risks to the surgery too, Adam could hemorrhage in surgery, he could come through surgery but could potentially be in a coma state again, and the other risks that he continues to face daily... speech impairment and other physical deficits as a result.  The suffering Adam has already been through and continues to go through daily seems endless.  It's an overwhelming decision to make and Adam and I together with his mom and dad and brothers ask you to please pray for us, pray for the right decision to be made, pray for the right team of doctors to come forward.  Pray for wisdom for us and for Adam's medical team.

In the meantime, because Adam's shunt is programmable they were able to adjust the setting to hopefully drain less fluid off and to see if this will help relieve some of his pain.  It takes a few weeks for us to really see the results of the shunt adjustment and we are still assessing it.

Another issue is the matter of all the seizures... Adam has suffered greatly from many severe seizures this year, no cause has been determined other than as a result of his injury.  While this may be true, I feel there could be other factors and other ways to treat and diagnosis Adam other than just adding more and more medication to the picture.  The neurosurgeons don't think that the seizures are related to the bone flap or the shunt, but I am not convinced.  I have been screaming for answers and I feeling helpless because every time I demand a definitive cause or any answer the neurologist just adds to the already crazy amount of medications Adam is on for his seizures.  We need God to intervene and bring healing and answers.

Psalms 9:9 The Lord is a shelter for the oppressed, a refuge in times of trouble.

Prayer is our greatest need.  Please join with us as we seek God for wisdom and cling to Him for our hope, and choose to trust through all that we are facing.   We are continuing to trust God for Adam's FULL restoration, knowing that He is Adam's Great Physician and is continuing a work in Adam that we cannot even fathom.  Thank you for your faithfulness.

I love my man... he has my heart

My girl, my man... my life