Part 2 of 55 Minutes (Mike’s story)

April 17, 2011

Family, Health, Mike

I wish I could say the days just after February 18 were long gone and forgotten but they are permanently burned into my memory. Afraid to close my eyes for fear he would slip away, I began my vigil and my advocacy for my husband.

We were in a private room filled with medical equipment and people around the clock. For the first few weeks Mike had an RN assigned solely to him. There was a monitor checking all his vitals every fifteen minutes. There was the ventilator. The pump at the foot of his bed for the balloon pump in his aorta. There was a machine to measure his blood gases which were constantly monitored to ensure the ECMO was doing its job. There was also a machine to check his clotting time. I think every half or full hour there was a blood gas and clotting time done. There was the ECMO pump which I came to think of as our salvation as it was keeping Mike alive by doing the job of his heart and lungs and allowing them to rest and recover. There was also a perfusionist in the room at all times. His job was to manage the results of the blood tests and adjust the lung machine as well as to determine how much iv heparin to administer. I quickly learned how much heparin would be administered and what adjustments would be made. The nurses on OHU and the perfusionists were amazing. Smart very smart.  The docs had created the medical treatment plan and they executed…within the parameters, they were in charge and made minute by minute decisions as to which med or how much to give.  I felt very calm knowing they were caring for him. Watching them in action was amazing.

On Day 2 the Docs told me that he had a ventilator acquired MRSA pneumonia. They were hanging iv antibiotics and we would need to hope for the best. On Day 3 a doc walked in the room, sat on the waste hamper next to me, took my hand in his and introduced himself. In the kindest and calmest, most reassuring voice I’ve ever heard, he told me “the first thing I want to say is that I believe in God”. I recall little else of what he said, other than to talk to me about giving Mike a tracheotomy and a feeding tube directly into his stomach. I deferred. I wanted a couple days to think about it. He agreed it would be fine and left the room. He came back in and I had a genealogical moment of Deja vu which I’ll post about another time for my genealogy friends.  

During this timeframe they did an EEG.  Although I had thanked the docs for saving his life, they continued to believe that Mike was not alive neurologically.  There continued to be veiled and/or outright suggestions that I needed to make decisions about stopping treatment.  I told them that they had given Mike 55 minutes in the cath lab.  They knew the consequences neurologically of continuing a code past 15-20 minutes.  Make no mistake, I told them, I was grateful that they had continued because if they had not we would have no basis for conversation and instead of a future I would be planning a funeral.  However, I told them, they continued when they could have called the code…they didn’t call it.  They put Mike in God’s hands.  Therefore my hands here on earth.  Now I needed to do what my heart told me to do as God spoke to it and I watched the evidence that Mike presented at any given time.  There would be no blanket DNR.  Since I was with him 24×7 I would handle every situation on an incident by incident basis.  They had given him 55 minutes I told them…I didn’t owe him less.  My belief was, and remains, that God had answered my prayer on February 18.  He didn’t save Mike just to go through all this and then leave this earth after much suffering and pain.  He had a plan for Mike and for me.  I didn’t know what it was yet…and I still don’t.  I only know that God was with me and in my heart I knew He was guiding me to the outcome He wanted to see.  And He still is.          

Throughout this time the nurses would check for signs of response or a reaction to pain, pupils that were equal and reactive. There were no good signs. Except to me he would squeeze my hand or blink his eye almost imperceptibly. The docs and nurses thought I was delusional and in denial. They did an EEG and had Neurology come in to talk to him.  There was a particularly annoying PA who dismissed everything I had to say about Mike’s participation with me.  He didn’t with her.  Bottom line.   The EEG showed slow activity and no response to outside stimulation during the EEG.  I argued that he was in a coma…it didn’t tell us squat.  The wretched PA kept returning…and kept doing nothing.  The nurses explained to me that during the arrest and code, there was widespread encephalopathy as a result of anoxia…the reduced amount of oxygen to the brain from less than optimal perfusion (circulation of the blood).  There was also huge amounts of fluid and swelling in his brain and elsewhere.  His body chemistry was going tilt trying to recover normal levels…which the docs needed to help with for days ordering one medication after another to balance his blood chemistry and achieve some sort of homeostasis. 

On Day 4 he began to come out of the coma. He thrashed about badly but still showed no purposeful response. He also developed a hematoma in his groin from the balloon pump. And fluid in his lungs. The balloon pump came out. A chest tube went in.  They put him in a medically induced coma and gave him enough sedation to put down several people.  Both meds were stored in fat tissue and had long half lifes.  Little did I know that the meds would be Mike’s best friend and worst enemy.  Still they tried to get him to respond to no avail.  He responded only to me and occasionally to his sister. 

The next day I talked to them about a trach and feeding tube. We made arrangements to have them put in.  I wanted to go to the surgical area to watch…you know, the gallery like you see on ER or Grey’s Anatomy.  No gallery at our hospital.  I feared being away from Mike for the only medical time I had been away something very bad had happened that I felt certain I could have controlled.  I was certain that had I been in the catch lab or been the one to tell him of his bypass requirement I could have managed his fear and the arrhythmias wouldn’t have happened and this whole mess would have been averted.  They would not allow me to go.  I needed to wait in the waiting room.  As they wheeled him out I asked them to please take care of him while he was away…he was the love of my life… and they wheeled him out and I prayed some more.  Mike was much more comfortable on the trach and I settled in to see what was next. 

Shortly thereafter they decided to withhold the high levels of sedation and bring him out of the coma.  He came out of the coma but they couldn’t be certain.  Only I could.  He was still relatively unresponsive to everybody but me and his sister Melanie.  Melanie was able to get him to barely, almost imperceptibly, blink his eyes on command.  The nurses cautioned me not to give up hope…the  medication would sit in his tissues for weeks and when the blood levels dropped, the body would pull sedation from his tissues.  And, since his systems (kidney, liver, lungs) for clearing such medication from his body were traumatized and not working optimally, it could take many weeks.  Still, the docs ordered another EEG. 

Mike had continued to respond to me, however it was miniscule.  One night he was being cleaned up for bed.  His nurse Debbie was doing mouth care with a little green sponge that was affixed to essentially a lollipop stick.  He had a habit of biting down on them when they were put in his mouth and the nurses had to wrestle to get them out.  Naturally, he bit down on this one and Debbie said she would get it in a few minutes when he relaxed his grip on it.  He relaxed and she attempted to remove it…and he bit down again managing to pull the sponge off the tip and into his mouth.  Behind clenched jaws and closed teeth.  Again she said she would give him a few minutes to relax and fish it out.  We turned away to do PM care and from the corner of my eye (and hers) we observed movement in his face.  He had screwed up his face, moved his tongue around, isolated the green sponge in his mouth and spit it out from between his lips.  This was the first purposeful thing anybody else had observed him doing.  Unfortunately they felt it was reflexive.  Only I knew it was purposeful and they thought I wanted to believe it…so they would allow me.  My entire hope for Mike’s neurologic future was hinged on that silly green sponge.   

There were two neurologists in the practice that saw Mike during this time.  A Dr. Spikol…who was wonderful and told us to believe and to hope…to wait and to see.  That nobody could predict the outcome.  Then, a partner.  A kind, but very irritating woman.  She only really seemed to want to hear herself talk.  She was uninterested in what I had to say, what was observed by me…if she didn’t see it, it didn’t happen.  OK.  I get that.  However, she visited every so often for less than 5 minutes at a time.  She read the second EEG.  She told me that his EEG was unchanged.  She said it had been ten days since the event and medication was stopped…he should be responding if he was going to.  I told her that her math was wrong…it was 10 days post event, however a medically induced coma was initiated days after the onset of the arrest, only just stopped a few days ago and the meds weren’t out of her system.  She said still…it is enough time for them to be out.  I pointed out the things Mike did to respond to me.  She dismissed them.  I told her the green sponge story.  She told me it was automatic, reflexive, like putting something in a baby’s mouth and they suck.  But he isn’t sucking on the tube, by the way, and it wasn’t reflexive.  It was very purposeful.  She asked me if I had heard persistently vegetative?  I said “So you are saying my husband will be chronically vegetative?”  She responded “Oh well….That would be a diagnosis”.  I was like well, isn’t that what you are here for stupid woman????  Instead I said…I don’t buy it.  He’s in there.  I know it.  She told me she knew I wanted to believe that and she was sorry, she wished she had better news.  She would stop in to see him every few days but there was nothing more to do.  I was incredulous, and furious.  Though very kind and well intentioned, she had been utterly dismissive of everything I had to say.  I fired her.  I told her not to bother stopping in every few days because she didn’t bring anything to my table. I told her I rejected her opinion and, since he wasn’t having seizures or migraines, there was nothing for her to do.  Since there was nothing for her to do and I reject her opinions, there was no way I was putting her kid through Harvard. Thus, her services were not required.  Several docs were rather surprised by this stance and told me we wanted neurology on board.  I said maybe so…but not that one.  We did not get another for a long while. 

On February 27th or 28th Mike woke up.  He responded to me.  His day shift nurse observed it.  He kept responding.  She was shocked.  She put him through all the medical response tests.  She yelled out the hallway that he was responding.  Through my tears I heard her yell, He’s responding, I’ve seen it…and nobody’s making it up.  I’m charting it.  I thanked God and hugged my husband, kissing him over and over. 

On March 1st he was transferred from Open Heart to ICU.  The docs were patting themselves on the back.  He was recovering.  They were thrilled for me and for Mike, truly.  Still, his responses were very sketchy.  Nurses kept charting that patient’s wife says he responds but he does not respond to nurse.  One day she asked him a question loudly…very loudly.  He responded and replied.  She concluded his hearing was probably adversely impacted in the cardiac event.  I asked for hearing tests…they told me he needed to be responding more. 

He was well enough, they thought, for transfer to an Acute Specialty Hospital to wean him off the vent.  I celebrated…we were getting on with our lives, putting sickness behind us…the future looked great.  Little did I know what was lurking…waiting…to derail the train.

Part Three, coming up…. http://wp.me/psKET-8J

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One Comment on “Part 2 of 55 Minutes (Mike’s story)”

  1. Susan Santee Says:

    Robin; you literally have me sitting on the edge of my chair with tears streaming down my face. Please, please tell me he is going to be home with you again.

    Reply

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