My daughter Allison was born with muscular dystrophy (age 43). She received 24/7 nurse's care. Allison always had someone by her side, as her needs required this. She had trach, a ventilator 12 hours a day to give her respiratory muscle a rest. She was G-tube ventilator and required trach and oral suction multiple times a day. Allison was never left alone because of her condition.
On August 7th, 2022 she tested positive for COVID. On August 10, 2022, she was unable to sustain her oxygen saturation with the equipment that she had at home. So, 911 was required and was called, she was then transported to Essentia Health in Virginia. The care she received in the ER was great, they allowed not only me but some of her nurses to participate in her cares, such as trach and oral suctioning.
Later that afternoon she was then transported by ambulance to St.Mary’s, down in Duluth. A note was sent with her that I did not want her to receive the medication known as remdesivir. Immediately upon her arrival at St.Mary’s we were told the she was not allowed any visitor according the hospital policy. They stated that their policy was 20 days of 0 visitors. The CDC policy states that it is 5 days at the time. Only zoom visits were allowed.
I was able to zoom call her that evening and asked if they were treating her well. She responded with a scowl and mouthed the word ‘no.’ At this time Allison had no form of communicating her needs or otherwise being they had changed her trach to a cuffed one. She was not allowed to have any family or caregivers there with her to assist with translating for her.
On August 11, when I zoomed called her, she was unresponsive. I asked the nurse if she was sleeping. They stated they had to sedate her with Ativan and fentanyl drip. When asked why, I was told that she would fight the ventilator. This was very confusing to me as my daughter has been on a ventilator most of her life without there being any problems. On August 13th I was told that I was not allowed to call and check up on my daughter, but instead I would be updated once daily at 11am from the doctor. I received my daily calls. On August 18th I was told that Allison had turned gray, and I was now allowed to come spend time with her, because they thought she was not going to make it.
One of her nurses and I went down to the hospital. Once there, my daughter remained sedated, she was on the ventilator, and I noticed that her feeding tube was not hooked up to her. When I asked the nurse why the feeding was not running, I was told it was disconnected the day before, because the doctor stated that Allison couldn't tolerate it. I told the nurse to hook it back up immediately and the feeding was to not be shut off. I was told the feeding will only run if the doctors believed that my daughter could tolerate it. I asked a few other questions about the vent settings. At that time while I was talking to my daughter her eyes started to flutter open. The next time the nurse walked in I told her that my daughter was waking up because she hears me.
The nurse left the room and within 1 minute there were 2 security guards at the door and the nurse practitioner came in and told me and her nurse to leave. When I asked why we had to leave, I was told that we were asking to many questions about Allison's cares. We were then escorted by the security guards out of the hospital to the parking ramp.
We were told that we could not see my daughter again until August 27th. I was able to spend 2 days with my unconscious daughter before she passed away on August 29th.
I feel that the hospital was negligent in their cares as they made all decisions without consulting me first. They had my daughter on a sedation medication, they would only suction her every 4 hours, they stopped repositioning her from side to side, they had her feeding shut off, and they took away her only form of communication by alienating her from her family and care givers. This was tormenting for me to watch and what happened to Allison must not happen to anyone else again.