Summer in the Waiting Room: How Faith, Family, and Friends Saved my Life (Excerpt #61)

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Ximena celebrating 8th grade graduation with her Tío Eddie – Spring 2016

Author’s note: The following passage is the beginning of Chapter 8, “Sharks & ‘Cudas,” of my book, Summer in the Waiting Room: How Faith, Family, and Friends Saved My Life.  This is the 61st excerpt in the blog series.

The text in italics indicates that the passage was from a vivid dream caused by a phenomenon doctors call ICU Psychosis. To learn more about what causes The Dreams, go to Excerpt #53 (https://esereport.com/2016/06/29/summer-in-the-waiting-room-how-faith-family-and-friends-saved-my-life-excerpt-53/)

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Chapter 8

 Sharks & ‘Cudas

 

 As the morning of July 9th dawned, it was the beginning of a busy weekend of birthdays for the family. That day, my niece Ximena, Kimberley and Miguel’s daughter, turned 8 years-old. The next day, another niece, Gabby, Valerie and Eddie’s daughter, would be celebrating her quinceñera with a big party. Initially, Val and Eddie wanted to cancel the party due to my dire condition, but Sandra persuaded them that life must go on for everyone, especially the kids.

Ximena, whom I nicknamed “Chimini” (it’s a long story), planned a full day of swimming at home with her cousins, and having pizza and cake later that evening. In a journal she kept that summer, she wrote about her birthday:

Dear tío Eddie,

I hope you feel better & see you soon hopefully. Guess what tomorrows my B-day & I am super Excited.

Sincerely,

Chimini.

She drew little hearts over the “i” in her name in place of the traditional dots.

Ximena and I have always had a close and special relationship. I’ve always admired her exuberance and love of life. Like me, she’s a chatterbox. When she was four or five years-old, she would sit next to me and talk about everything that came to her mind. It was a crack-up watching this little girl speak with so much passion and conviction as her eyes and gestures told as much of the story as her words.

I learned from my dad that children, like adults, had minds of their own and thoughts that they wanted to share. I followed his example by being genuinely interested in what kids have to say. Ximena’s inquisitive mind and animated way of expressing herself always made our conversations interesting. She reminded me of Marisa at the same age. I felt so blessed when she later asked me and Sandra to be her godparents for First Communion.

After a full day of swimming and pizza for dinner, the family headed for the hospital at Ximena’s request. Earlier in the day, she told Kim that she wanted to celebrate her birthday where “Tío Eddie could be nearby,” so Kim decided to have cake and open presents at the hospital cafeteria.

The large crowd, which now included family from out of town that began arriving for Gabby’s quinceñera scheduled for the next day, moved from the waiting room to the cafeteria. There, the usual party of 20, plus some, sang “Happy Birthday” to Ximena, ate cake, chatted, and laughed making the plain hospital cafeteria feel as much like home as the waiting room. For Ximena and the kids, it was no different than being in Nana’s family room or at one of our houses.

The family was together with loyal friends celebrating life. Ximena noted in her journal that, “Today is my birthday & we’re at the hospital. It is fun but it would’ve been funner with Tío Eddie.” I’m sure I felt the energy of their celebration as I slowly showed signs of improving two floors above.

The next day, the celebration of life for family and friends would continue with a traditional Mexican-American quinceñera. Sandra opted to stay with me at the hospital as the girls helped the family prepare for the day. The activities included photos in the morning, a mass at church, and a reception in the evening followed by dinner and dancing.

Miguel recalled that getting ready that day was hard. The adults wanted to have a cheerful celebration for the kids despite heavy hearts. It had been a long summer for everyone. The respite was much needed by all.

As party preparations went as planned that morning, fever became a growing concern for doctors at the hospital. Danger of infection is a major concern for patients staying in the ICU for long periods of time. For the past few days, my body temperature hovered around 100 degrees and test after test couldn’t identify an infection.

My white blood cell count was high as the body tried to fight off the unidentified malady. As the morning wore on, the fever periodically peaked at 103 degrees, prompting the medical team to determine a course of action to address the latest crisis.

When Sandra reported the news to her mom, Mrs. Peralta offered to be with her at the hospital. Sandra asked her not to change plans and not to alarm her sisters or their families. Tía Martha Peralta and cousins Tavito and Ana Peralta, who were in town for the party, decided to join Sandra so she wouldn’t be alone.

Will, Juanita, and Marianne would also be with Sandra that night. With the bulk of the waiting room gone, the usually bustling space was quiet while Sandra and the others chatted and waited to hear news from the doctors.

***

I was sweating profusely. I was terribly uncomfortable. The room was bright as the glare of the large round lights overhead generated even more heat causing my body to feel like I was in an unbearably suffocating steam room. With the exception of the bed, the room was virtually empty. A wide open space led to the hallway where I could see nurses and doctors walking by. I yelled for help, but couldn’t make a sound. Wiggling around on the hospital bed, I tried to free myself from invisible restraints to catch the attention of someone, anyone.

I think I was in maternity ward. I could hear babies crying and see nurses carrying lifeless infants in their arms. The babies were bright red and sweating, obviously suffering from the same heat that consumed my body. All of a sudden, hospital staff started rolling cribs into my room, each filled with a wailing baby red-hot with fever. I wanted to help the babies, but couldn’t attract the attention of the people bringing them into my room.

Despite the scorching environment, the nurses and doctors in the hallway, all dressed in white medical uniforms, looked cool and refreshed. A tall male physician with blonde hair wearing classic black horned-rimmed glasses, a white doctor’s smock, and a smart white shirt and dark tie, walked into the room. After evaluating my condition, he coldly instructed a nurse to find ice to pour over my body. Without emotion, he then began to help the poor babies who were helplessly suffering from fever.

The nurse returned with a warm and assuring smile carrying a silver steel bucket of ice water. Others followed with more pails of relief. I was no longer in bed, but in a small tank that was filled up with the ice and water carried in by the stream of hospital staff. The nurse, a cheerful brunette woman with high cheekbones, big brown eyes, and a soothing bedside manner, told me to relax and get some rest. Soon the fever subsided and I fell asleep in the refreshing tank of ice water.

***

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Next Wednesday: More on The Dreams caused by fever and ICU Psychosis.

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Summer in the Waiting Room: How Faith, Family, and Friends Saved My Life (Excerpt #60)

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It had to be a dream! – Image by http://www.shutterstock.com

Author’s note: The following passage is the final excerpt from Chapter 7, “Sticking With God,” of my book, Summer in the Waiting Room: How Faith, Family, and Friends Saved My Life.  This is the 60th excerpt in the blog series.

The text in italics indicates that the passage was from a vivid dream caused by a phenomenon doctors call ICU Psychosis. To learn more about what causes The Dreams, go to Excerpt #53 (https://esereport.com/2016/06/29/summer-in-the-waiting-room-how-faith-family-and-friends-saved-my-life-excerpt-53/)

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On the morning of July 8th, nine days after the oscillator began its work, doctors ordered the respiratory therapist to remove the machine that caused so much angst and fear for my family. The loud thumping sound emitted by the oscillator and the heaving of my chest as air rushed into my lungs with steady precision suddenly stopped.

The pulmonologists had anticipated that I would be connected to the machine for three days at the most to prevent serious lung damage. Miraculously, my lungs and heart survived the constant thrusting of air even though it continued three times longer than expected. Sandra was excited about the rapid progress during the past few days.

Doctors also ordered the gradual discontinuation of the medicines that kept me paralyzed and in a deep sleep. It would be another major step toward overcoming the seemingly impossible. Throughout the day on July 8th, Sandra returned to her journal to document even the smallest piece of good news with exclamation points on each page. Her excitement couldn’t be restrained as she wrote, “Trust steadily in God, hope unswervingly, and love extravagantly. And the best of the 3 is LOVE. I love you!!!”

Feeling encouraged and hopeful, she retreated from the ICU and the hospital to have dinner with the girls and her family.

***

            I slowly opened my eyes and found myself in a strange place. Looking around, it appeared as though I was in a college classroom or professor’s office. I must be close to the ocean, I thought, because I could hear the sounds of waves crashing onto the sand. I could see students with backpacks walking about outside the door.  Even more strange, I was in a cartoon! With the exception of the people I could see, everything else was animated like some kind of Disney movie: furniture, walls, floor, and ceiling.

            I was sitting on a fluffy red arm chair with big colorful pillows all around me and on top of me. They were bright pastel hues of pink, blue, green, purple, orange, and red. I could see my hands and feet, but I couldn’t move them because the cartoon pillows were heavy despite looking light and airy. A medical student walked into the classroom wearing a multicolored nurse’s uniform and scribbled something on the whiteboard I couldn’t understand. When I called out to her to ask about my whereabouts, no sound came from my voice. I couldn’t talk!

            When the student left the room, I began to get anxious. Where was I? What was happening to me? I tried to get up from the easy chair, but the heavy pastel-colored pillows prevented me from moving. I looked around to find a way to call for help as my anxiety intensified. I saw my trusty cell phone on one of the pillows near my feet. That phone had been at my side through thick and thin during my professional quest for redemption and success. It wouldn’t fail me now. All I had to do was text Sandra and she would clear everything up.

            After what felt like hundreds of futile attempts, I couldn’t reach the cell. The pillows on my arms and chest were just too heavy. I was paralyzed, sitting alone on a big cartoon chair in a college classroom near the coast of who knows where. Panic began to set in, my heart started beating harder, and my breaths became shallower. I was scared and confused. Then suddenly, to my relief, Sandra walked into the classroom. She approached me with her angelic and reassuring smile to caress my head with her soft hands telling me that everything was going to be okay. Relaxed and feeling safe, I fell into a deep sleep.

 ***

Sandra had a relaxing dinner with her family and the girls. Despite the fact that doctors continued to say that I was still the “sickest man in the hospital,” she started to get a sense that we were at the beginning of the end of this nightmare.

I was still breathing with the help of the ventilator and nitric oxide machine, but the oscillator was now a thing of the past. I even twitched a few times when Sandra or a nurse touched me indicating that the paralytic medicine was wearing off. All of these events were signs that progress, albeit in tiny increments, was being made.

During the 30-plus days of the ongoing nightmare, Sandra worked hard at keeping the girls lives outside the hospital as normal as possible. They settled into a daily summer routine that started the morning with swim practice. Marisa spent the day at her summer job at the cabana. Erica would spend time with her cousins and Nina Shelley. When evening came, the girls would go to the hospital with one of Sandra’s sisters, have dinner with Sandra and the family, and participate in the activities that unfolded in the waiting room.

The girls would always visit my room together before leaving for the night. Following the advice of doctors, Marisa talked to me with an upbeat tone in her voice encouraging me to fight on. An occasional blink of my eyes would bring a short burst of excitement for whoever else was in the room. Erica stood by quietly, but confident that I would be okay. Once they said goodnight, they would walk out together, Marisa usually fighting back tears and Erica silently walking beside her.

Back in the packed waiting room, small groups were huddled together gossiping, telling stories, eating snacks and drinking coffee. The scene looked like family and friends gathering in a large family room. In addition to the stockpile of food and drink, there were blankets and pillows strewn on the chairs and small table tops. Sometimes the room would get loud as someone told a story or made a joke that generated howls of laughter, only to be reminded that they were in an ICU waiting room.

Erica later told me that when visitors of other patients opened the door, they immediately paused, surveyed the scene, and mumbled some sort of apology with an “oops, sorry” look on their faces as if they stumbled into someone’s home. The startled visitors would quickly shut the door and search for another place to quietly and peacefully support their loved ones in the ICU. The rhythm of the waiting room would resume as soon as the door closed.

As evening turned to night, Sandra’s core of support would begin the process of returning to the real world and preparing for another day. Those who wanted to see me came into my room for a brief prayer and to say goodnight to Sandra while others, who couldn’t bear to see me in such a helpless state, patiently sat in the waiting room.

When Sandra returned to my room in the ICU on the night of July 8th, her mom was with her. They stood staring at me wondering what the future would hold. The man who had an abundance of energy, a tireless work ethic, and a love for parties was in a deep sleep and motionless. Over the hushed chatter between Sandra and her mom, the quiet room echoed with the sound of the machines that kept me alive.

Before leaving for the night, Mrs. Peralta rubbed oil, blessed at the church, on my lifeless legs, arms, and forehead and prayed to St. Jude pleading for his intervention. Sandra’s mom hugged her second daughter tightly in the quiet ICU, made the sign of the cross on her forehead, and kissed her goodnight.

In the waiting room, those who still remained gathered in a circle as Rudy led a prayer. Sandra came out to the waiting room and thanked everyone for visiting before joining the round of ritual goodbye hugs. It was another tearful “see you tomorrow,” another night sleeping on a cot beside the man she loved, another night the girls were away from home, and another night of hope.

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Next Wednesday: Chapter 8, “Sharks and ‘Cudas,” begins!

Summer in the Waiting Room: How Faith, Family, and Friends Saved my Life (Excerpt#59)

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Image by http://www.buzzfeed.com

Author’s note: The following passage is from Chapter 7, “Sticking with God,” of my book, Summer in the Waiting Room: How Faith, Family, and Friends Saved My Life.  This is the 59th excerpt in the blog series.

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During the dark days of July, Sandra vowed to stay positive and urged the waiting room to do the same so that I could feel the energy around me. Marisa and Erica made posters and decorated the room with photos so I could wake up to a place filled with love. One poster wished me a Happy Father’s Day and another celebrated the 4th of July.

Colorful drawings of me with my favorite things, like the ever present San Francisco Giants baseball cap on my head, graced yet another poster. Sandra had been by side every day and every night since the awful cardiac arrest incident and her faith grew stronger as my condition worsened. She ended that morning’s entry into her journal by writing,

“You will make steps closer today because I know that you are fighting to get back to us. We love you Babe!! More than you know…”

I spent two decades of working relentlessly to rid myself of self-perceived failure demons and trying to make Sandra proud that she chose me. Now at my most vulnerable, Sandra expressed her love in the most intimate way. She was talking to me through her journal hoping that I could hear her through the whirring din of the ventilator and the thumping boom of the oscillator.

I had always thought that important professional titles and financial security would impress her, yet the prospect of losing me made an impression on her soul more deeply than any professional or material accomplishment ever could. Although I was motionless on the hospital bed, her love and energy provided the fuel for me to fight.

Later on the afternoon of July 5th, my heart started racing again. While Sandra was spending time with family and friends in the waiting room, my heart rate shot up to 140 beats per minute and my blood pressure dipped below 80/40. When she walked into the room to check on me, medical personnel were once again scrambling to prevent another cardiac arrest episode.

Doctors had to make a complex decision in only seconds. As noted in my medical record, I hadn’t been on amiodarone to regulate my heart beat for several days. Nevertheless, the toxin was used again to bring my heart back into rhythm. Until my lung issues were resolved and a defibrillator could be installed, doctors had no other means to stabilize a racing heart.

Despite that scary moment, Sandra’s faith grew stronger. She described the incident in her journal as “just a little bump in the road.” Later that evening, after saying goodnight to the girls, she walked into the room as the song “Here and Now” by Luther Vandross played on the CD the girls recorded for me. We used the tune for our wedding march almost 20 years earlier.

To Sandra, it was a sign from God that I would be back and that we would be able to continue our life together.  In addition to her absolute commitment to God’s will, she was determined to do all she could to ensure that I would survive. She went on to write, “I know you are coming back to me. I will not accept anything less and I promise I will fight with you until I have you back with us.”

With the frightful day coming to end, Sandra’s unwavering resilience gave her hope. Before she prepared for another night on the uncomfortable cot that sat just feet away from her lifeless husband, she turned to Scripture for comfort:

“I’m sticking with God. I say it over and over again – it’s all I’ve got left. He proves to be good to me and to all who passionately wait and diligently seek Him. It’s a good thing to quietly hope from God.” – Lamentations 3:24-26

While the breathing machines and monitors rhythmically hummed, thumped, and beeped in the dark, Sandra laid back on the portable bed in the ICU and closed her eyes with hope in her heart.

Over the next few days, I began showing signs of promise. My lungs were still terribly saturated with fluid and continued to be unrecognizable to an amateur looking at my X-rays. Nonetheless, the oscillator appeared to be doing its job. The puffs of air that the machine was sending into my lungs were opening air sacs enough to stabilize my oxygen levels allowing the other vital organs to function. The numbers weren’t getting any better, but they weren’t getting any worse.

Doctors were encouraged by that and started making plans to consider options for moving forward. On July 6th, they made the decision to decrease the intensity of air being rushed into my lung sacs by the oscillator. They advised Sandra to be patient and to wait for my body to be completely ready to be weaned off of the breathing machines.

In the meantime, Sandra and the girls continued to support each other with a strength that could only come from their faith and the knowledge that my love for them was without limit. Sandra noted in her journal at the end of the day that “we were getting baby steps closer” to the end of this ordeal and to the moment I would return home.

A couple of days later, as my condition showed signs of improvement, nurses received notification to stop administering Verocounium, the medication that kept me in a paralytic state. Although doctors told Sandra that it would take months of intense physical therapy to completely recover from the muscle memory loss caused by the medicine, she was relieved that the drug wouldn’t do any more damage.

While pleased about the good news regarding minor progress with my lungs, the medical team was becoming concerned about a new problem. A bedsore was forming at the base of my back as a result of laying motionless for more than a week. To keep the sore from further irritation, hospital staff created space between the bed and my body by placing pillows under my shoulders, butt, arms, and legs.

The white pillowcases made it look like I was sleeping on a bed of fluffy clouds, a comforting, yet ominous, metaphor for heaven.

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Next Wednesday: In a major step forward, doctors decide to take me off of the oscillator.

Summer in the Waiting Room: How Faith, Family, and Friends Saved My Life (Excerpt #58)

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Photo by Mariano Peralta – July 2010

Author’s note: The following passage is from Chapter 7, “Sticking with God,” of my book, Summer in the Waiting Room: How Faith, Family, and Friends Saved My Life.  This is the 58th excerpt in the blog series.

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The numbers and the answers from the medical team weren’t promising. The most pressing issue was the cause of the lung failure. X-rays showed that my lungs were saturated with fluid. Reviewing the images on the X-ray screen was like looking at a blizzard from the safety of a window.

Only a trained eye could see through the heavy white haze and recognize any resemblance of normal lungs. Fever was constantly present surpassing 100 degrees several times per day indicating the possibility of infection. Despite these tell-tale symptoms, every culture sent to the lab returned negative for infection, pneumonia, or bronchitis.

Nevertheless, my oxygen saturation level fluctuated from 70% to 90%, numbers that were dangerously low especially as I was breathing with the help of the ventilator and oscillator.

While doctors were eliminating causes for the respiratory problems through tests, Sandra became more frustrated and confused. Marianne’s theory that ARDS could be the reason for my lung failure was echoed by one of the ICU nurses who cared for me. The nurse told Sandra that she had treated several ARDS patients before and my oxygen saturation levels and X-rays pointed to the respiratory syndrome as the culprit.

Every time Sandra addressed the issue with doctors, they were reluctant to confirm the diagnosis until all other more common causes were eliminated. Sandra and others were beginning to believe that ARDS could be the problem. The waiting room internet researchers agreed, but continued to be puzzled that I hadn’t experienced any of the conditions that led to the onset of the rare and deadly syndrome.

My medical record sheds some light on what doctors were thinking. Doctor comments about ARDS first show up on the record shortly after the 4th of July weekend. Using words like “possible” and “feasible,” they developed a course of action that addressed the syndrome. As there is no cure for ARDS or medication that directly addresses the symptoms, doctors took aggressive steps to enhance the probability of survival.

The ventilator, oscillator, induced coma, paralytic medicine, and steroid treatments combined to give me the best chance to overcome what looked like a hopeless situation. What still created the atmosphere of bewilderment was what caused me to be in this state. There was no infection, no blunt trauma, no pneumonia, or any other event that shouted out “ARDS!”

One entry into my medical record on July 1st indicates that doctors were concerned about the continued use of amiodarone, the medication I was prescribed to keep my heart stable and prevent another episode of cardiac arrest. The entry read:

“recommend stopping amiodarone, as you already have, after getting more details around the circumstances for starting it and weighing risks/benefits of using it.”

Several hours later, the same doctor wrote the following directive:

“Discussed circumstances for amiodarone therapy which was related to arrest during acute event. Would therefore stop amiodarone.”

For almost two decades, the drug has been used to stabilize the heart rate during cardiac arrest episodes. The American Heart Association (AHA) determined that amiodarone improved the survival of cardiac arrest patients and recommended its use in the 2000 AHA Advanced Cardiac Life Support Guidelines.

Since then, the drug has been a staple in hospital rooms where a life-threatening cardiac event unfolds. Ten years later, the 2010 AHA Guidelines for Cardiopulmonary Interventions declared that the first-line remedy to basic life support for cardiac arrest patients is amiodarone.

The drug has many potential side effects due to its toxicity. However, amiodarone use has rarely been associated with the development of ARDS. Some studies have shown that no more than 5% of patients who take the life-saving medicine develop lung poisoning.

The studies further found that a rapid progression to ARDS in cardiac patients could be related to the dysfunction of the left ventricle in the heart, the precise location where my heart was damaged. However, the main theory in recent studies is that that there could be a connection between amiodarone and a high concentration of oxygen delivered to the lungs during a lengthy time on a ventilator and an intubation pipe.

When doctors expressed concern about amiodarone in my medical record n July 1st, I had been intubated and on mechanical ventilation for a prolonged period of 13 days. Since researchers are still in the hypothesis stage, the diagnosis of ARDS, especially related to amiodarone, is challenging and routinely overlooked.

The damage to my lower right heart muscle allowed nothing more than a weak stream of oxygenated blood to reach my worsening lungs. On July 1st, it had been three days since the doctors aggressively addressed the situation that was causing my lungs to fail. While ARDS wasn’t the official diagnosis, it was clear to everyone – doctors, nurses, Sandra, the waiting room information gatherers, Marianne – that I was part of that 1 to 5% with full-blown acute respiratory distress syndrome.

The best-case scenario was that I had a 70% chance of survival with some organ and brain damage due to oxygen loss. Worse-case, I would succumb to this rare syndrome like the 30% who don’t live through it.

Despite all of the data that was conspiring against me, Sandra’s entries into her journal were upbeat. On July 5th she wrote, “Today is a new day and I thank God for one more day with you.” She had endured a long weekend when each hour brought a new concern, another setback, and renewed hope when the last crisis was resolved.

It was a holiday weekend when lots of visitors came to support her and the girls in the waiting room. The few who were allowed to see me tried to give Sandra hope even though their faces expressed hopelessness. Sitting alone looking at my lifeless body and hearing the numbing sounds of the life support machines doing their work, her faith gave her more hope than ever.

That weekend, Mariano snapped a photo of Sandra one morning after breakfast. She sat pensively contemplating an uncertain future. Her eyes reveal enduring faith, steely determination, eternal hope, and unconditional love. Reminiscing about the photo a few years later, Mariano wrote,

“Without her knowing it she reignited something inside of me at that time …and that was to NEVER QUIT! No matter how gloom the situation to never stop believing and to never step down from the fight, to have Faith! She provided an example to me that I could never have learned from reading a million books or going to hundreds of seminars. I felt that for the first time in my life I was looking straight in the eye of Unshakable True Love At Its Finest!”

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Next Wednesday: My heart starts racing and doctors work to stabilize the situation while Sandra, once again, turns to her faith.