My Patient Story
Congressional District: WA04
Issues and Challenges
Mollee has encountered: Medical Discrimination
Written originally on 1/27, 9 days into my father's hospitalization. Revised after my Dad's miraculous recovery and discharge home!!
Covid patients in the hospital being isolated, alone, sick, and afraid. Those dying are doing it alone via FaceTime. How terrible is this!!!!
Unfortunately, I am in a situation I thought would never happen to me. My Daddy is fighting for his life in the ICU here in North Dakota. My Dad has PTSD from being shot in the line of duty, as well as from losing his wife- mother to his 4 small kids - to brain cancer in his 20s. The PTSD causes anxiety, fear of being alone, and a bad response to loss of control.
What I know about a severe lung disease, is that rest of the lungs is needed for healing. Anxiety that causes hyperventilation can only impede the healing process. Also in covid patients they need to lay on their bellies early on which is one of the very best treatments, even over the medications. My father was unable to tolerate laying on his belly because his anxiety was so high. The doctors were unable to give him enough medication for his anxiety because they did not want to drop his drive to breathe that would cause him to be intubated.
I fought and fought from the day he was admitted to be able to be in with him to help with the psychosocial aspect that I know was making his medical condition worse. I hit a roadblock everywhere that I turned but I didn't give up. I just want to give hope for those people out there and those family members because I know that these are uncharted times with a scary disease and I know that public health is of the utmost importance. I also know that policies we have in place currently in this country are unethical and detrimental to the healing of patients.
I spoke with charge nurses, house supervisors, managers, and then the director of the ICU. I did feel that they were hearing my concerns but that they were not going to budge on the policy. In terms of public health and the safety of the nurses in here, I have already had Covid and recovered as well as have both of my vaccinations. This I think is a huge reason why an exception should have been made much earlier.
I finally asked for an Ethics consult, as I told the ICU director that I appreciated her hearing me out but that her decision was unacceptable. My dad was intubated at 5:30 in the morning on Sunday, scared, and alone. At 8:30 Sunday morning a doctor with the Ethics committee called me for my consult. I told him my dad's situation and background as well as my situation and background. We discussed the above and he agreed. He told me to give him a couple hours and he would be my advocate and he would talk to whoever he had to to get me in. He called me at noon and told me that he had met with the heads of the hospital and they had agreed that it would be unethical to keep me from my father's side. They had to make a whole new protocol for entering the building and exiting etc.
This morning I was called to a meeting with the manager of the ICU, the director of the ICU, the director of spiritual services, and the Ethics Committee. They started the meeting off by thanking me for my courage and my persistence. They thanked me for rippling these Waters, as change does not happen without those ripples. They have all met over the last few days within the hospital and also have spoken with hospitals across the country for their protocols. But they have found, as we all know, that across the board in this country we are handling this wrong. Even though this hospital's policies are the same as hospitals across the country, they have taken it upon themselves to change their policy from my Dad's situation! They're in the process of their new policy, one part of it will be patients on high flow oxygen that are getting close to being needing intubated on this covid floor will be able to have a family member come and be with them. There are other changes that they are looking at for visitors, keeping in mind this infectious disease and their responsibility to the patient, staff, as well as the public health.
I am so encouraged today by the leaders in this hospital. I am encouraged for the future of the patients and families at this hospital, and I'm hoping that this will trend across this country.
I can't wait for my Daddy to wake up so he can hear the changes he's inspired!!!
2/1/21, after 9 days of being on the ventilator, I was at my Dad's side when he was successfully extubated!!! I was able to hold his hand and help comfort him as he literally thought he was dying. This time and the 48 hrs prior, were essential as his support person as he had been weaning down on sedatives in order to wake him up enough to breathe on his own and follow commands prior to extubation. This was his first recollection of the ventilator, and even though he was getting better, his felt so terrible he thought for sure he was dying and begged me to let him go.
On this day, 20 days after diagnosis, he was able to be taken out of isolation and his wife and the rest of his kids that had been down the road for 9 days, were allowed in to see him.
2/4/21 Dad was able to discharge home after what his doctors called "Remarkable" "Miraculous" and "Drastic improvement". He was on room air while awake and at rest!!!
My understanding from multiple conversations with multiple doctors and nurses is that not many patients with severe Covid Pneumonia that are intubated are successfully extubated, and definitely not this soon in the process. Dad's doctors told me on multiple occasions that they thought my presence was helping him improve and thanked me for being there. Now that Dad is recovering at home, I have heard many stories of his thoughts and nightmares that he experienced during this adventure. His will to live was gone when he continuously dreamt that he had missed the rapture. It wasn't until he heard his parents voice through the phone that I held up to his ear, that he could identify this as a nightmare.
The day Dad was extubated our main focus was keeping his anxiety low, as it was manifesting in very high blood pressures, high heart rate, and hyperventilation. He would do good with me at his side and then it would sky rocket again when I was gone. Anything after 4 hours, management had decided I needed to leave the room to eat and drink. They had a special room on the floor they had set up for me to go for this. I explained this to Dad, but he still asked me not to leave. Per the nurse, while I was gone for 18 minutes, he told her many times he needed me and he was dying. I can't even imagine people having to go through this alone!!! There are many of these stories that I could tell from this scary time, where I know having a support person was essential!!
Being an RN who has worked in the hospital in the past, I knew the avenues to take in order to be at my Dad's bedside. I know many of you feel helpless and are unsure the avenue to take. I hope and pray that this is just the beginning of the conversation, and that Sanford hospital in Fargo North Dakota is not the only place to look at and revise their policies!
Update 2/22/21 - Dad lost 40 pounds while laying in a hospital bed for 3 weeks. He was wheelchair bound when he came to my house to rehab 2.5 weeks ago. Today, he's walking alot without his walker and has gained 8 pounds. He's WELL on his way to being back to work!!! God is good
My Motivation and Inspiration
I'm motivated to change policies across this Great Country!!