Over the years, God has led Scott through many dark nights with the terminal illness of ALS. Traveling this path together has taken us into Death’s Valley; a lonely and desolate place for any soul. In these shadowlands our footing at times has been unstable; the effort of each step has developed in us a deeper trust in God. In this barren land, we thirst, longing and desperately seeking for the refreshment of Living Water. In God’s unfailing compassion, He has made springs in our desert and has prepared a table in our wilderness. He is near; His Word revives and nourishes our souls. Exceeding great and precious promises are ours in Christ. Steadfastly we hold fast to our hope in the confession of our faith leaning upon our Beloved Savior for comfort.

This journey has required us to go beyond outward religious observances, performance or preconceived interpretations defining the ways of God. He does not take pleasure in being limited by unbelief but will not be restrained if we seek Him earnestly. As I look back since Scott’s ALS diagnosis in 1997, I can testify of our Father’s equipping provisions and wondrous works as He has lovingly kept us in His care. His Word has become more relevant and alive to us. Yes, God has had mercy on His afflicted giving Scott and I confidence to rest in His love by faith.

The following medical episode has become a significant memorial of God’s faithfulness in our lives. Related to several months of 2009 which became a crucible time of our faith, the specific account on the night of June 3^rd chronicles what I perceived to be medical abandonment allowing for Scott’s closest experience with death. It has taken me some time to process the limitation of Scott’s medical care in the Emergency Room that night. I have sought to gain perspective instead of the incredulity and utter helplessness I experienced while trying to advocate for my husband’s life.

“The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness”  Lam 3:22-23 (ESV)

Emergency Room- June 3^rd 9:30 pm

When Scott arrived to the hospital they ran a bunch of lab tests. They also did a trach exchange to replace the one that was ruptured. Once doing so, they inflated the cuff so the ventilator could more fully support his lungs and the air would not escape through Scott’s nose and mouth. I explained to the doctor that we had the test results from the recent sputum culture indicating heavy growth of pseudomonas bacteria (which can be extremely dangerous for people with poor lung health and weakened immune systems). I also informed the doctor of the ineffective tablet antibiotic Scott had just finished and a prescribed treatment of 2ml antibiotic aerosolized through a nebulizer (breathing the small dose of medicine) that he had begun that afternoon. I believed Scott needed something more immediate and powerful in his bloodstream to get him over the hump toward being able to manage this chronic infection by nebulization. The ER doctor acknowledged this approach. Scott has a P.O.L.S.T statement on file at this particular hospital indicating that he chooses all life sustaining measures (including antibiotics).[1] When the ER doctor telephoned the pulmonologist-on-call, he was advised that Scott should be sent home to continue the treatment he had begun with the aerosolized antibiotic. Without even seeing Scott, this pulmonologist maintained that with no other signs of infection from routine lab results, he only had a local lung infection.[2]

I asked the ER Doctor to please call the pulmonologist back to reaffirm this decision because I strongly believed Scott should receive intravenous antibiotics for expedient and thorough treatment. The ER doctor did as I asked but when he returned, he apologetically told us of his obligation to defer to the pulmonary specialist in this case and Scott would not be receiving I.V. antibiotics. He explained the concern of giving him the IV antibiotic that the bacteria could become more resistant to stronger antibiotics and eventually nothing would be left for Scott if he were to have Pneumonia in the future. I told him, I was more worried whether Scott could survive the night, not whether he would get a future pneumonia.

We were both stunned and in disbelief; trying to process the dismissal. We were helpless, in a desperate situation for survival, unable to appeal to other medical personnel in ER because the authoritative decision made (over the phone) by the specialist Doctor. Even though he was not present to ascertain Scott’s labored breathing while on the ventilator.

I could not comprehend that the hospital staff was restrained to help but instead were sending my husband home in this helpless state. I pleaded that Scott needed to stay. Seeing that I was distraught and attempting to console me, I was asked patronizing questions concerning my state of well being. Volunteering for me how exhausted I must be as the primary caregiver and inquiring whether or not I had additional help at home. I felt pitied and belittled since this had nothing to do with why I was so adamant that Scott receive healthcare. Scott was the one at the hospital for medical attention and he needed it urgently! When the ER doctor returned to the room I could sense that he had regret, he apparently was caught in the middle. He was the Doctor who had direct contact with us and could see that Scott was in a desperate state. He then suggested that he would place another call to the pulmonologist and that I could talk to him. I eagerly said I would surely speak on the phone to the pulmonologist, the ER Doctor left the room to place the call. He quickly returned in a change of manner and said abruptly; it had been decided; we were to leave and an ambulance was there to take us home. He then left the room.

The Charge Nurse came in to try to smooth over the situation explaining to me that the hospital was too full and that we wouldn’t be able to get into a room until morning anyway (it was already almost 3 am). He asked me persuasively if we wouldn’t “rather be home, wouldn’t that be what Scott would prefer”…had we not “already talked about Scott’s final wishes?….whether to be at home or ……?” His voice kind of trailed off, I think he read my face. He was trying to help but was making matters worse by implying Scott’s impending death. I was infuriated by his questions and told him that we had come to the hospital for help and Scott’s “final wishes” did not have anything to do with why we had come to have an infection treated. I knew then that the staff had given up on Scott.

Sent Home – June 4^th 3:30 am

The ambulance drove us home early Thursday morning; Scott returning without having received the antibiotic intervention we we were convinced he needed I was in the cab of the ambulance with tears of disbelief. I could not comprehend the Emergency Room sending Scott home as if he didn’t merit any further efforts from the physicians-these are the qualified practitioners we all go to for assistance in times of health crisis. This experience was my first introduction to what is considered futile care “the belief that in cases where there is no hope for improvement of an incapacitating condition, that no course of treatment is called for”. [1] Wikipedia®, updated 29 May 2010

God Made a Way

Thank God for His ministers and servants! I contacted our family physician out of desperation as soon her office opened Thursday morning, June 4^th. Dr. Paula was instrumentally used to dispatch a home infusion company to come out the following day. They accessed Scott’s port and began him on a 10 day course of IV antibiotics. I can’t begin to thank her and her staff for their empathy.

I administered Scott’s antibiotic every 8 hours around the clock for the following 10 days. Scott responded to treatment within the first few days and was able to get off the ventilator and out of bed. He was very unstable and weak at first, not too sure of his own abilities, so our daily routine went very slow. Scott didn’t get out of bed each day until 3-4 pm in the afternoon and could only manage to be off the ventilator for a few hours. Slowly, Scott began to recover in the following weeks. On Father’s day, June 21^st the kids were able to honor their dad. In our trouble, God was with us and delivered us (Ps 91:15). In our desperate search during the years of Scott’s affliction, God continues to reveal His providential care.

Reflection and Application

I’ve now had a few years to gain perspective looking back to the perilous months before and after Scott’s tracheotomy surgery in 2009.  All hell seemed to be closing in to extinguish Scott’s life, to prevent him from being a light to this world and share the Good News of the Gospel. Scott’s increasing dependence upon others has rendered him powerless to control even his own breath. As we identified with Jesus, we confronted our own “Gethsemane” experience to surrender to the Father; “Not my will but thine”. At times, we agonized in our prayers because God, for some reason, was silent choosing rather to hide Himself (Ps 42; 43; Luke 19:41-42).

“I can of Myself do nothing. As I hear, I judge; and My judgment is righteous, because I do not seek My own will but the will of the Father who sent Me” Jn 5:30 

I have watched God’s covering of protection see Scott through many close calls to praise the Lord another day. If the Lord had not intervened in mercy with deliverance and provision, Scott would not be alive today. At times we have felt as though we were drowning in our circumstance, floodwaters driving us beyond the borders of our capacity. God faithfully brings us through these waters too deep to cross (Ezek 47:3-6) taking us places we may not willingly go. His mighty river transforms death into Life by the flow of the Spirit carrying us the increasing current of the Lord; according to the will of God and not our own.

“There is a river whose streams shall make glad the city of God” Psalms 46:4

Over the years, despite monumental opposition against the calling on Scott’s life, we have been compelled to walk ever closer to our Savior. As we incline our ears to hear His voice, we experience His Living Word, we are enlarged to grow and sow seeds of faith into the lives of others; walking as stewards of the manifold Grace of God.

“the things which happened to me have actuallyturned out for the furtherance of the gospel” Phil 1:12 

 

 

SCOTT BRODIE June 2009 Sent Home

Glennis tells of Scott being denied IV antibiotics and admittance to hospital

 

 

 

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Footnotes:                                                                                                                              

[1] Scott had stayed at this same hospital for his Tracheotomy surgery just 2 months prior; on file they had the documentation of Scott’s Advanced Directives, Power of Attorney and P.O.L.S.T statement (Physicians Order for Life Sustaining Treatment). A checkbox within this statement informs medical personnel NOT to refuse antibiotics if life can be prolonged; Scott consented to all interventions, those were his wishes. Considered “Full-Code” his POLST was signed the month prior, incidentally, by the pulmonologist on-call who gave the orders to send Scott home without antibiotic treatment.

[2] Pseudomonas can become systemic throughout the bloodstream and can become fatal. The Cystic Fibrous populations consistently have to be treated with antibiotics because of the persistent and colonizing character of pseudomonas and other forms of bacteria that can be life threatening.

[3] Wikipedia®, 29 May 2011

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