Main concerns:
- No visitation allowed at St. Luke’s Hospital in Milwaukee, WI during 2 separate hospital stays. My mom, 79 yrs. old with COPD and partially handicapped, always had either my father or I with her at all dr. appointments and hospital visits to advocate for her and because of the language barrier with my mom especially when related to medical terminology. My mom had not been vaccinated for covid because of our concern for adverse reactions due to 7 different medications my mom was on for the past 10 years. I called my mom’s primary care physician’s office in the Spring of 2021 to inquire whether her physician would recommend mom getting the covid vaccine given all the medications she was taking. Their office wouldn’t recommend one way or the other and left it up for us to decide.
- Treatments for covid given during the last stay.
FIRST STAY - Dec. 30, 2021 - Jan. 2, 2022
Mom had a pressure sore wound that wouldn’t stop bleeding. We called her physician’s office to see if a wound care nurse or someone could come to house to look at it, stating we wanted to avoid Mom going to the hospital for covid exposure reasons. They couldn’t get anyone to the house and recommended we take her to the ER because she’s on blood thinners. The ambulance arrived and my father was told we could visit once mom was assigned a room no. When we called an hour later, we were told the hospital had changed their policy and that no visitors were allowed under any circumstance.
Released from the hospital late afternoon on January 2nd. Mom was not herself once she returned and thought her family abandoned her because she didn’t understand why we weren’t there to visit her. Her appetite diminished the days following and she was depressed. A wound care nurse then visited the home twice a week from January 5 – 13th to monitor the pressure sore wound and take vitals. At no time during these visits did the care nurse indicate my mom presented with any covid-like symptoms.
SECOND STAY - Jan. 15, 2022 - Jan. 19, 2022
Admitted for what we thought may have been a mild stroke from her symptoms (although partially handicapped on her left side from a stroke 25 years prior, my mom couldn’t move the lower part of her body and she was delirious). The hospital refused visitors, took tests and said my mom had a UTI, pressure sore wound tenderness, and positive for covid. On-call doctor phoned my father with the update and mentioned mom tested positive for "slight" covid.
Jan. 15th, (Saturday) between 7:00-8:00pm, were told of mom’s test results for UTI, pressure sore wound concern, and "slight" covid. On-call dr. said they’d administer steroids for the covid and I asked that they get a hold of mom’s primary care physician or her pulmonologist to contact me to discuss their recommendation for treatment for covid.
Jan. 16th, (Sunday)
- Between 9:00-9:30 a.m., I phoned the hospital to get an update on my mom. Nurse was not available, so I left a msg. with the nursing station for someone to return my call and let me know when I’d be able to speak with her primary drs. to discuss treatment. Nurse called back, not sure about status of the doctors’ availability. I also asked if we could bring my mom’s hearing aids to the hospital since she didn’t have them in. They would not allow us to bring them in because of covid restrictions.
- Between 10:00-11:00 a.m., the on-call dr. called me, mom’s oxygen levels were good, but dr. suggested we consider having Remdisivir administered. I relayed to the dr. that I’d prefer to discuss alternative treatment with her primary drs. because of concerns with possible kidney damage with Remdisivir. On-call dr. felt my mom’s kidneys were not a concern, but that he would relay the msg. to Mom’s pulmonologist and assured me he would call me within the next hour.
- 3:00-6:00 p.m., After a few more calls to the nursing station to check on mom’s status and with the hopes of hearing from her primary drs., I had not heard from either dr.
Jan. 17th, (Monday)
- 8:00-10:00 a.m., Telephoned the hospital a couple times to check on mom’s status. Still no call from her primary physicians to discuss covid treatment.
- 12:00-2:00 p.m., Telephoned again to check status and spoke with the nurse practitioner who recommended we consider treatment with remdisivir. After I expressed my concerns about it and asked about alternatives like the monoclonal antibody treatment, which I read can be given during late stage covid, he said the hospital wasn’t authorized to administer any other treatment except for remdisivir. He told me my mom’s oxygen level was dropping, so with this pressure to decide, I agreed to the remdisivir.
- 4:00-7:00 p.m., Telephoned twice again for status, was told mom’s condition was stable.
- 7:00-8:30 p.m. At this time, I had been in contact with Vitas Home Hospice to get information on their procedure on getting home hospice care in the event my mom’s situation turned for the worse. Spoke with the chaplain and was told their administrator would get in touch with the social worker and could get an order to present to the hospital to have mom released with our permission. The hospital would not release mom under the circumstances.
Jan. 18th, (Tuesday)
- 8:30-9:30 a.m., Telephone again for mom’s status. She was doing ok. Asked why I haven’t heard yet from her primary physicians, nurse couldn’t explain but that she’d relay the message again.
- 1:30-2:00 p.m., Finally heard from mom’s primary physician. He said mom seemed to be doing fine, talking with him, and that he had just met with the infectious disease drs. and they recommended an additional treatment, the IL 6 Inhibitor. This is the first I had heard of this treatment and her primary dr. along with the infectious disease drs. felt it was something that would benefit her. Feeling a bit more assured now that her primary dr. finally called, I went along with his recommendation.
I requested my mom’s medical records two weeks later from both stays. After sifting through them, I found my mom had Stage 3 kidney disease, something I hadn’t known before. I’ve read and heard that Remdivisir is a controversial treatment, not recommended for those with kidney disease.
The IL 6 Inhibitor is not recommended for those with 1) COPD or 2) current bacterial or fungal infection, both of which my mom had. Informed consent is questionable too, my phone call with her primary dr. was not an informative call about his recommendation to administer the IL 6, only that he recommended it after meeting earlier with the infectious disease doctors.
January 19, 3:30 a.m. – Received telephone call from the cardiologist indicating my mom wasn’t doing well and to let me know that they would allow one visitor to come in to visit for the end-of-life stage. Stayed with my mom from 4:30a.m. until she passed at 11:30 p.m.
Waterford, Wisconsin