My Charlie was diagnosed with covid on September 13, 2021. We went to the outpatient infusion center at Delnor Hospital on September 15th to get monoclonal antibodies. They took his blood oxygen levels, and it was in the high 70’s, so they wouldn’t give him the infusion.  They took him down to the ER instead.

After hours in the ER, they moved him up to the ICU. I made multiple calls trying to get information while he was in the ER. I was told repeatedly that the nurse would call me back. She didn’t. Finally, around 5pm, I called again and was told there was no one named Charles Madeira in the ER. I said, “WHAT?!” They looked his name up in the computer and said “Oh, he was admitted to the ICU.”  Right off the bat, the lack of communication with me – his wife and caregiver – worried me.

Charlie had residual nerve damage in his fingers that was slowly healing from the encephalitis he experienced in 2019.  He had two preexisting conditions – RA and multiple myeloma. The RA was being controlled with low dose steroids and he had just finished a round of cytoxan. The multiple myeloma blood work numbers were so low the myeloma was considered MGUS.

I was finally able to FaceTime him that night. On September 17th, I got a joint call from a palliative doctor and a social worker. They wanted to know what Charlie’s goals were. I told them his goals were to dance at our three youngest kids’ weddings in 2022, and to walk his baby girl down the aisle. They talked about Charlie’s preexisting conditions and how bad covid is, and then they asked, “What if his goals change?”  That frightened me. I told them his goals were not going to change.  He was a fighter – he survived the two life threatening events and was not going to let covid kill him. I told them I didn’t want to talk with them anymore since it seemed like they wanted a DNR. I was never going to allow that. He wasn’t even intubated, and they wanted to know if he wanted to live?

When I spoke with an ICU doctor, I was told they administered remedesivir and barbcitinib. Our daughter spoke with my husband on Friday, September 17th and he told her he was feeling better.  In the early morning hours of Sunday September 19th, I got a call from the ICU doctor who told me my husband needed to be intubated. I made a FaceTime call to my husband so I could see what was going on.  My husband was struggling to breathe. The doctor told me if they intubated him it would give my husband’s lungs a rest. (Liars). From that point on my husband was sedated and restrained because he kept trying to pull out the breathing tube.  He was very claustrophobic.

Dr. Pavel intubated my husband on 9/19/21.  His notes don’t mention any esophageal damage but when the breathing tube was removed on 10/05/21, and a trach was put in they saw a “medium sized” hole in his esophagus.  I asked if it was caused by the breathing tube, and they told me Dr. Pavel was a “straight shooter” which I understood to be a no.

They blamed the steroids but I didn’t believe them. They put in a feeding tube at the same time. I was told repeatedly that there were drugs they could give him through the feeding tube that were better but had to wait until the the hole in the esophagus healed.  I got a call from the social worker on October 9 – she said they talked about moving him to a specialty hospital where he could receive long term care while he recovered.  This would be after the hole in his esophagus healed.

I spoke with the intake person at Kindred in Sycamore, IL, and I was told I would be able to visit my Charlie.  They based allowing visitors on the date the patient was first infected with covid.  That person was wonderful – she spoke about weaning Charlie off the respirator – it was a 24 hr/day process.  When I told an ICU doctor at Delnor that I’d be able to visit Charlie at Kindred he didn’t believe it.  I told him I just got off the phone with Kindred and gave him the intake person’s name.  His response was that my husband was still “shedding virus.”  Previously I had argued with a nurse and asked what were they afraid of?  I had recovered from covid, they were all vaxxed, boosted, and masked – so why couldn’t I see him?  I was told that was hospital policy and I needed to have an N95 mask which they wouldn’t provide, and I couldn’t bring into the hospital.

I got to see Charlie for an hour 5 days before he died. The only reason I was allowed in was a doctor called to tell me my husband wasn’t going to make it. When I was in the hospital room, I was touching Charlie’s arm telling him how much I loved him.  He kept trying to open his eyes but they had him so heavily sedated he couldn’t.  His breathing was a bit labored and I asked the nurse why he was breathing like that – she was very abrupt in her response, “It’s his body trying to die.”

I was only allowed an hour because I wouldn’t agree to “comfort care.” They kicked me out of the room after an hour, and the doctor wanted to meet with me.  The nurse and a charge nurse were in the room with us. The doctor told me Charlie wasn’t in “any immediate danger of dying.”  They wanted me to agree to comfort care.  I refused because I still had hope Charlie would recover.