Interview notes regarding Johnny’s Life and  Hospital Experience:

Our first child was born three weeks early on Holy Saturday April 18^th, 1987. On Easter the doctor told us they wanted to test our baby for Down syndrome.  Johnny was perfect, a precious blessing from God who changed us forever. Upon his birth our journey became to afford our son every opportunity that all parents want for their children, a full life within his family, school, and community. Johnny exceeded our expectations and became much more than just a member of society.

Johnny was like sunshine; he created happiness, and brought smiles wherever he went and with whomever he met. Johnny loved many things but the competition and camaraderie of athletics was at the top of his list. He lettered in High School swimming, track and field, and excelled in Special Olympic year around sports program. He was a multiple medal winner in basketball and in track and specialized in the 100 meter run, relays, and shot put. Most memorable, though, Johnny earned the right to represent Team Oregon at the 2010 National Special Olympic Games in Nebraska in swimming with his favorite challenge, the Individual Medley consisting of all four swim strokes.

Being very photogenic Johnny was chosen as the poster athlete for the 2012 Oregon State Games where from that time forward he introduced himself to new acquaintances stating “I’m Famous” and gave them a signed picture. An avid worker, Johnny helped on the family farm and fed animals, cleaned pens, assisted in fence building, and raised and showed numerous champion sheep. In 2006, his last year in 4-H and High school, he earned Champion Market Lamb and 1^st place senior swine showman where the judge praised Johnny’s patience and ability.  Awe-inspiring, his High school classmates gave Johnny a standing ovation at graduation.

In 2008 Johnny, fresh out of the school transition program, met the owner of a local company where his smile brightened the business on a weekly basis for the next fourteen years of gainful employment. Johnny added a second day a week to his work schedule that included lawn mowing and clean-up where both jobs continued until his passing. Johnny mentored living life to its fullest. He truly demonstrated Jesus’s unconditional love for all people. For several years at church Johnny rang the bell and carried the cross which paved the way for his proudest honor and joy to serve mass on the alter which he did with reverence until Covid. Johnny and his father were members of the Knights of Columbus which provided him with friendship and a full Knights honor at his funeral. Johnny has many friends that today miss him dearly and he was blessed with two years of incredible love with his girlfriend he planned to marry.  Johnny passed away from complications of Covid on August 26^th, 2021.

It was the second year of Covid mandates and we took many of the recommended vitamins including zinc.  Vaccines were still not federally approved as safe.  Several friends and family members had severe reactions from the vaccine, some ended up in the hospital.  Making these decisions for our son lay heavy on our mind.   Being over 60 and much experience through cold and flu seasons we relied on and had success with natural immunity without vaccines, doctor visits, or antibiotics.  We led a healthy and active lifestyle.  For years Johnny insisted on his twice weekly treadmill workouts he so enjoyed.

In July 2021 our life consisted of Johnny’s work commitments, church engagements, several family events and attendance at the local county fair at the end of the month.  On August 1^st and 2nd my husband and I started to feel different, strange.  By the 3^rd it felt like my body had been hit by a car with fatigue, muscle pains all over, and headaches and included a fog, almost a sedated state.  None of us had a fever, sinus, or lung issues.  Johnny showed no outward indications of distress except being lethargic.  We read up on Covid and felt that there were some signs that this was what we had. Following procedures by the CDC and our local medical instructions, we did not go into our doctor office.

However, this sickness could be described as not like any normal flu or other illness we could relate to. This was horrific; it was as if something had taken over our body and did not present itself as a disease of nature. The timeline was after the first Covid epidemic; we assumed it was the Delta “devil” variant. Johnny came into this world with a very keen sense of certain things, many of which included communication with God. He prayed every night with the last month of his life being very insistent about his time spent talking to Jesus.

Several weeks before we all got sick Johnny started an unusual behavior and shared with us that he was scared and that at night there was a wolf outside his bedroom window. Because of his fear, he asked to sleep with us, something he had not done since he was a young child. Covid hit our bodies with such a force that even eating was a chore and nauseating so we ate gruel for a number of days. The three of us took all the vitamins as recommended to fight off Covid affects and we stayed isolated. On August 7th we were feeling a bit better.

Johnny was a trooper and we were able to get up and be more active again. Johnny loves exercise and got on his tread mill for an hour. Things were looking up and we thought we were on the back end of recovery.  The next day, Johnny developed a fever.   We gave him medication and he took a cool shower.  At this event we wanted to be sure it was Covid. On Monday the 9^th we called our doctor offices to send in a fax to the local testing station.

Johnny and his Dad’s office faxed a request; my doctor office did not.  I was turned down upon arrival to get tested. They both came back positive for Covid. On the 10^th we tried to get an appointment for Johnny to go into the physician’s office and have his lungs listened to and get medication. We were turned down… and told to stay at home and take Tylenol and Cough medicine. Johnny was not getting better; I called again for medication, a prescription for cough medicine and antibiotics for potential pneumonia which the nurse practitioner did order. The pharmacy did not have it in stock but I could pick it up the next morning.  But by the afternoon of Aug. 12th Johnny had a slight fever at this time and diarrhea, we took him to the emergency.

Extremely afraid of hospitals, Johnny refused to go, but finally we coaxed him in the car. I carry so much guilt; one is that some of my last words to him were a lie; I told my son he would be home after the doctor visit. Upon arrival 45 miles away, Johnny’s agitation increased.  I retired in June from a job that took me away from home for 12 hours a day. Johnny’s dad oversaw his daily needs and job supports for over a decade, they were inseparable with a close bond. Because I did not have a positive test, I could go with Johnny into emergency, his Dad could not. Why did we tell the truth? Very few questions were asked.

With low oxygen, they put a mask on Johnny; he went into a flaying panic. Johnny desperately needed his Dad who had a calming effect with him. He was given 1 mg of Lorazepam, 6mg of dexamethasone, and 1000 ml of sodium chloride. I was with him as he rested. By the morning of the 13^th Johnny still struggled to get enough oxygen and the doctor stated that he would tire himself trying to get air and wanted to vent him. I called my husband and the doctor told us that Johnny would die if they did not vent him, we agreed.

At this time Johnny was given Fentanyl and propofol for sedation and the  “Covid precaution per protocol” and received 200mg of Remdesivir and 6mg of dexamethasone.  As stated in  the medical report he was also to receive 1 to 2 mg of morphine every 4 hours and .5mg of Ativan as well for anxiety and ceftriaxone and azithromycin for possible bacterial infection and 40mg of enoxaparin 2X/day until it was determined if he had a pulmonary embolism.  Soon after venting the doctor addressed us that Johnny was the most critical of the Covid patients in our small town hospital and he wanted to air flight him to a larger one to get more care that he would need… We agreed.  We followed several hours behind as we had a three hour drive to get there.

Not letting us in with Johnny upon arrival, we tried to sleep in the car. Upon opening to visitors, I was still the only one allowed in as they did acknowledge Johnny’s disability but denied his Dad. Johnny was heavily sedated. I was allowed to be with him all day. My husband was out front of the hospital, praying. On Aug. 15 a new doctor came on duty with a three day shift and shared with us Senate Bill 1606 recently passed that year that gave care providers rights to be in with loved ones with disabilities.  He informed the nursing staff and we were allowed in to be with Johnny, one at a time.

That evening his Dad brought in all of Johnny’s favorite Christian music and CD player. This doctor also told me to get pictures of Johnny and put them on the walls to help staff see him as the alive beautiful person he was, not just a lifeless patient. This doctor also took the time to put in an arterial catheter line in his arm that allowed nurses to use it as an easy blood draw for all the numerous testing they did. Previously the blood draw nurse would have to poke Johnny several times to try and draw blood, all causing black and blue arms. He also advocated for Johnny to go onto a wait list for an ECMO machine, bless him for investigating all avenues to try and help our son.

The specialists of the ECMO in another hospital, stated to try and prone him for the lungs to work better. This did improve Johnny’s stats for a while as well as his music and his Dad’s presence. ECMO was taken off the options a day later. For the rest of two weeks different doctors rotated in and out as did all the staff.  One of the nurses early on looked at Johnny’s oxygen needs and other data and stated “we may be able to save this one”. Her comment sent chills down our back. Johnny improved for several days and we were very hopeful.

As the days went on a rash of incidents and events took place; the ventilator broke down on numerous occasions with the therapists having to give Johnny oxygen by pushing on a bag by hand.  The doctor on duty stated he was concerned that Johnny had experienced too much oxygen loss from this particular incident. They performed an x-ray and found a blood clot in his leg and added increased drugs for that. A horrible mistake was finally discovered by a male nurse that Johnny had a plugged catheter causing his body to distend and may have caused much undo damage to his internal organs. Johnny had bowl movements that had reached the maximum number of times nurses had to clean him up so they inserted a tube in his rectum. He had a tube down his throat that caused bleeding in his mouth, a tube in his neck artery, a tube in his arm, plus other drip lines in his hand.

After a week all these tubes caused infection and they claimed he potentially acquired Mersha, and began him on a whole new regimen of drugs. Family and friends and three communities of people whom loved Johnny prayed for him and we called in a priest for healing prayers.  Prognosis reports from the revolving doctors regularly went from positive to negative again with one crisis and human mistake after another. We observed that nurses and respiratory therapists hold the key to hospital care and make life decisions for patients. It was difficult for this big hospital to keep enough staff; nurses would work full-time for one hospital, and then be hired for weekend shifts by another.

Transient staff was not always familiar with machines and one nurse had the food drip line going into the discharge unit instead of Johnny’s stomach.  We watched and recorded many of Johnny’s stats. His blood pressure zoomed up to almost 300 on the top end, we alerted the nurse who had just messed with his dials, and she said “Opps, I set it wrong, no worries, I can change it back”. We were told that keeping Johnny under paralytic sedation too long could result in life-long problems, and a nurse announced “Johnny may not be the same” if he lives. They planned to get Johnny off the paralytic, a first step to getting off the ventilator, but the next shift nurse made the decision that he was breathing over the vent, and increased the sedation drugs again.

Doctors spent little time in the room and after a week or so communication went silent. On Aug. 24th the last doctor informed us there was nothing more they could do for our son. As we feared, Johnny’s organs were shutting down, his kidneys were not working and only a bit of dark red fluid was coming out. We were hit with reality that Johnny had no chance to get better and come home; we stood by helpless as we prayed and watched our son’s body slowly die. The staff stated we both could be in with him now around the clock. One nurse tried to convince us to disconnect the ventilator and ‘love on him until he died’ in which I cried that I would never give up on my son and miracles could happen.

Johnny’s body started ripping open and oozing from the kidney failure as his body filled with fluids.  We stated we wanted all drugs and liquids to be discontinued. We heard that people under sedation could possibly still hear and understand that loved ones are near. Johnny has a brother, numerous cousins, close relatives and friends. One of his cousins wanted to say the Rosary to Johnny. Phone call after phone call was put on speaker phone to say “Good-Bye”. It was just a couple of hours later that Jesus called Johnny home. A very good friend stated that with babies, children, and people with disabilities, Jesus comes himself to take them to Heaven. I believe this is true. Johnny’s strong faith prepared him for eternal life. His dad and I struggle daily with grief but Johnny pushes us forward to find ways to continue his mission of “spreading happiness”.

It is unfathomable that other parents, children, and spouses are not able to support loved ones in the hospital. Covid rules are barbaric and need to be changed. It has been a year this month that Johnny left Earth for a better place but for his dad and I, it is just like yesterday. We were blessed to have one doctor that advocated for our rights to be with our son. My heart breaks for all who lost a loved one to Covid and for all patients with fear of dying alone. Covid medicine protocols are wrong as each individual has health and personal needs to be considered.

On August 9^th, after my son’s evening prayers, Johnny who had trouble with communication stated very clearly to his Dad and I that “Jesus say I die and rise in three days”. Taking Johnny to the emergency hospital which led to ventilation and Covid protocols was three days. Johnny now knows that Jesus took him to his eternal home.