Fighting Period

One of the worst parts of the stroke I think was dealing with the health insurance.  That’s sound really crazy doesn’t it.  It happens and when it was happening to me I wondered at people who did not have good insurance or a strong support system like I did.

Shortly after Scott was in Neuro ICU the social worker and an intake Nurse for a Rehabilitation hospital came to see me.  They discussed with me how things should go for Scott, leave Neuro ICU, move on to the Rehabilitation Hospital, then on to a rehab facility and home with home health care.

WOW easy sounding, logical sounding, medically sound because the Doctors, nurses, therapist all agreed yes this should be the plan. Scott was to get the highest level of rehab because he was so physically active and completely independent before the stroke.

I researched the rehabilitation hospital and it seemed great, it was in the network, covered, all the junk it needs to be so off we go.  Then I found out up front and in my face how it really works.  When the social worker mets you very early in the morning to tell you someone in an office , somewhere who are have never seen, touched, examined your husband is the one who decided he cannot go where his huge team says he must go.  It is unreal, and I mean it on top of exhaustion, worry and eating to much hospital cafeteria food you try to figure out what happened…what does this mean.

You try to be logical.  You say I have the highest coverage offered.  I have had the highest coverage offered always.  I pay the highest premiums so I can have the highest coverage.  Why ???  In case one day something bad happens like your husband has a stroke and it is large and it is bad, and it is deep in his brain and he almost dies but does not.

So then your team starts figuring out how they are going to change this situation.  I call my boss, my HR benefits person and anyone else who will listen.  Then the hospital advocate tries and gets shot down but the evil, invisible power that is making life and death decisions based on something other than need and medical necessity.

He was denied, denied, denied, denied, yes folks 4 times each time a little more wind was taken out of my sails.  By the way at this time he was progressing and they got him off the vent and put a trach in.  NOW everyone is excited , they have to approve him now they say there is very specific weaning from a trach..the rehabilitation hospital is only 1 of 2 places that do it.

They denied him.  Don’t worry they say all he has to do is fail the trach test 3 times.  I filled with wonder and fear because I was told you don’t do the trach test right away.  The first test he lasted 45 minutes, then fail.  The second test he lasted 2 minutes went into oxygen failure and his BP spiked to …yes STROKE LEVEL.  Honestly I cannot even remember the 3rd test, but he failed.

DENIED.

What was this crazy world I was in please just let me go back to my life I do not want to be here and listen to this and then make decisions.  They appealed and it was approved.

Dear god, I know there is a special place in either heaven or hell for insurance companies.

Fighting Fear

Fighting fear is a battle many people face everyday of their lives and their fear is real, the intensity of the fear is personal.  I don’t think I would have survived my husband’s stroke without God’s presence in my life as well as my pastor and friends who supported me in many different ways.

I felt God’s assurance that Scotty would not die in the emergency room.  That does not mean I was not scared or did not weep.  There was plenty of weeping.  Fighting the fear with my relationship with God is what brought me through.

There was a situation where God let me know he was with me and Scotty and I was making the right decision.

What started out as high emotion day because therapy was getting Scotty out of bed to exercise and sit in a chair and everything was going great until his oxygen level bottomed out and he was in a crisis.  They moved quickly and efficiently getting him into bed and the oxygen going strong his levels went up, then down, then up , then down.  I know there may be more horrible things to see but someone struggling to breath is bad.

The pulmonologist with the bad bedside manner was called, he explained to me we need to put Scott on a vent or he would probably die.  I thought immediately of all the real life and TV shows….a person goes on a vent and then you are deciding to pull the plug.  I couldn’t bear it, why did I have to decide.  I walked into the hallway crying .  My boys were in the room, my pastor was there looking at me waiting for the decision.  But Oh God how good he is my pastor who I think of as a great guy and a man’s man.

He said “Diane if it was me I would want Kathy to put the vent in” Of course it was Scotty’s life , his chance and I had to think for him I agreed.

Then that evening the night nurse another great one, came in and said “Diane, I know this is a big step back for Scott’s progress but what you did was give him a chance to live.”

This is how good God is to give you confirmation and reassurance when you are weak and need him the most.  Out of our weakness comes great faith!

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Back to the Beginning and Doctors

When Scotty first was admitted to ICU you met so many people just a constant flow.  The nurses, therapists, and other staff all seemed to walk in introduce themselves and explain what position or expertise they had concerning my husbands care.  Some of the doctors did the same.  I don’t live in a bubble and have had my fair share of dealing with the medical community.  One Dr in particular was pretty rough to deal with he walked in did not introduce himself, I couldn’t see his tag to see his name or what type of Dr he was and his first words to me were “Do you have a DNR (Do Not Resuscitate)) your husband is in bad shape”

I guess I had a look on my face, the nurse took him out in the hall and told him he upset me, no he didn’t upset me the stroke upset me. He had the bedside manner of a fence post but that is ok if you are a great doctor.  He became a better doctor because I confronted him on every negative stance he took with Scott’s care or future.  I told him I don’t believe in Unicorns but I have a strong faith in God.  I explained that just because my faith in God was strong did not mean I could not make a sound medical decision and because I made a sound medical decision it did not weaken my faith in God.

On several occasions when he made negative comments like the first time Scotty was alert and tracking was Veterans day while he was watching the Green Berets, he asked me if all Scotty could do was lay on his side and watch movies would he be happy, would I be happy.  OF course not, I told him it was his job to see if that was all he could do …so do you job and get him out of the bed and find out.

By the end of the time Scotty spent in Neuro ICU the doctor’s mannerisms changed when he talked with me.  He was very important being the pulmonary specialist. He also really had warmth towards our son Jacob, I think when he realized Jake was special needs, but asked him great questions about his dad.  Every Time I saw him he asked me how my son was , is he dealing ok with his dad’s stroke.

The moral of this story is no matter what the Doctor’s personality pursue your questions until they are satisfied.  Don’t be mean, rude or disrespectful just stand firm and demand their attention.

 

The First 14 Days

The first 14 days I did not leave the hospital except for an hour or two running to my friends house to take a shower.  The first thing that happens after the seriousness of the situation sinks in is that you have to make decisions about everything and the whole family is depending on you to make the right ones.

Information piles on you from all around, at one time there was a Neurologist, Pulmonologist, Infectious Disease, Neurosurgeon, Nutritionist, Nurses, then the Respiratory, physical, occupational and speech therapists.  Droves of nurses all buzzing around you in Neuro ICU to make sure no stone is unturned in the best care for your loved one. But with that comes decisions, some are easy and some are hard.

I am not saying I did not cry or get upset or feel sorry, sad, desperate but at least during all of that God keep assuring Scotty is not going to die.  That being said it was a very long 14 days, I worked, I prayed, I sat by his side, I whispered in his ear “You fight and come back to me”  what a truly selfish statement.

I looked at my husband bloated, swollen with tubes and things in every possible opening in his body.  I longed to just touch but there was not much open skin.  I cried because I missed talking to him.  I needed him to help me make decisions but the decisions were for him and he could not help.

Every chance I had to wash a part of him, lotion his feet, and shave his face I did it with determination, frustration and joy to be of service.  I would fall asleep for a minute and then it was time to leave the room so they could do a chest x-ray and I would shuffle down the hall in my dirty pink fuzzy slippers, nodding to the nurses as I passed.  Then back to nod off and jump up when the doctors made their rounds.  A whole pack of people whispering and talking about your loved one. Waiting and pacing until you could talk and ask questions get test results and see what was going to happen next.

During this time I had to make the decision to put a ventilator in, I was horrified, the kids were looking at me, our Pastor was there I was stricken.  I walked out into the hall to sob, I watch too much TV what did I know about vents…You put one in and next thing you know they are telling you, you have to decide to pull the plug.

God puts people in the place he wants them to be and if they are faithful his words come out of their mouth.  My pastor who is a man’s man and I could never imagine living 1/2 a life looked at me and said if it was me, I would want my wife to put me on the vent.  I made the decision and he could breathe.  Then the night nurse  who I adored because  he was fantastic and quick, neat as pin and wonderful manner said Diane this is a big step back for Scotty but what you did was give him a chance to live.  What can I say God wrapped it up in  a bow for me.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The Day it Happened

The day it happened was normal, I had gone into the office.  Scott and Jake were at home and the plan was to go pick up our younger son Jack who was spending the night because we were going to Indiana to see my dad.  Normal for sure.

It was getting to be the end of the work day for me and I received a phone call from my son Jake, it is the phone call everyone dreads, something has happened or happening to one of your loved ones.

Jake told said “there is something wrong with Dad, he is driving badly we almost crashed on US 19 and he won’t listen to me”  Jake put me on speaker phone and all I could hear was unintelligible mumbling from my husband.

I yelled” Scotty, Scotty there is something wrong you are scaring Jake, pull over safely, pull over safely.”  He did and Jake put the car in park and turned off the engine.  He hung up to call 911.

I instantly felt devastation, horror, sadness, and a sense of unreality.  Packing up my things as I called my other son Jack asking him to go meet his brother.  All the while praying for God to be with my family and to make a safe journey for me to the hospital from the office.

I called my best friend and told her pray and call our pastor to ask for prayer.  Call EVERYONE!

I called my sister and sobbed into the phone that something was terribly wrong with Scotty and I did not know what it was.

Arriving at the ER seemed to take forever, Jake had already called and let me know he was in the ambulance with his dad.

Can I just talk a minute about Jake?  Our special needs son who suffers from anxiety and seizures. He calmly took care of his father and answered all the questions, and got him to the ER because of his fast action and clear thinking.  Scotty got the attention he needed very quickly.

Soon after arriving in the ER they moved Scotty to a room right across from the nurses station because of the severity of his condition.  In their terms..touch and go.  In God’s terms there was instant assurance in my spirit that my husband was not going to die.  All these months later I am so thankful that he is here with me and our family.