September 19th, 2021, our world fell apart when my dad was hospitalized. We had been treating him at home with my herbal medicine for what we thought could be covid. He had a cough, high fevers, sinus congestion, and chilling. He even experienced hallucination! He hallucinated he had a delivery truck delivering a pallet of covid beer and needed to stay awake to get it before my mom saw. This continued for a couple days. Although he withheld this from me until the night before he went to the hospital. He had gotten better, we thought we had beat it, until the morning of sept 19th. He came to my house like normal on a weekend morning for breakfast. He had a coughing fit that we didn’t think would stop, which wasn’t overly unusual as he has asthma, and this has been common my entire life. What was unusual, is he began to throw up handfuls of blood. I immediately grabbed my pulse ox and checked; he was sitting at 74! I told my mom to get him to our local ER. They determined he had a blood clot somewhere in his body, double pneumonia, no not covid pneumonia, and of course tested for covid antibodies. Many don’t believe me when I say this because we have been trained to fear this amped up cold, but covid is NOT what got him down. Covid was pretty much gone but had attacked his immune system to the point he couldn’t fight off pneumonia.
Our local hospital immediately put him on antibiotics and Remdesivir, even with us saying no to this drug. If you don’t know anything about it, here is why we didn’t want him to take it. Remdesivir was originally evaluated in clinical trials for Ebola in 2014. It is an experimental drug, which isn’t properly explained in many hospitals before use. Remdesivir has many side effects, but one that stood out to us is kidney injury. As someone who studies herbal medicine, I research often and prior to this knew the risks of this drug. That is why we insisted we did not want him to be on this medication. Our nightmare started here, when we asked, he not take it, he told them he didn’t want it, and they refused to stop the medication. He was transported to a larger hospital, where they stopped the antibiotic drip but continued Remdesivir.
He was put on covid ICU, where he was kept away from our eye and we wasn’t able to ensure his care was where it should be. He signed a POA over to me and my mom when he arrived, which was the best thing. We later discovered this hospital had taken over decisions for another person who didn’t sign it instead of allowing her family to make her medical decisions. He was told by a resident doctor that he would go on a ventilator, and he would not come off of it, that he did this to himself because of his weight. He seemed to get better; however they still hadn't put him back on antibiotics and refused to stop Remdesivir.
September 21st, we got the call we dreaded, "He can't breathe. We need to place him on a ventilator, his oxygen is in the 50s, do you give permission?" We had just spoke to him an hour prior and he seemed fine, he was having a coughing fit and they was not allowing him to get out of bed. When he has those, he gets scared and needs to walk around to clear his airways, we told them this, as did he, but they still didn’t want to deal with him being up. We asked to video him before they put him on the ventilator, where he told us he didn’t want to die, and he loved us. We then get a call an hour later from a resident who told us he wasn’t on the vent yet but was sedated and oxygen was back up in the 90s. We at this point requested that he not be put on the vent and be kept sedated to avoid panic attacks since they seemed to be causing severe coughing fits. This resident doctor got very rude, told us she could not do that and refused to get the doctor who could. She also informed us we couldn’t make that call as he had given permission. I asked if there wasn’t a POA giving me that right, to which she said it wasn’t notarized so they would be making the decisions. We continued to call for an hour, where no one would take our calls. At this point we got a call from the pulmonologist, the first time we had spoken with an actual doctor. He told us he got him on the ventilator, however it was a challenge because he has difficult airway. He confirmed he was stable prior to this while being sedated, and that we had the right to say hold off and keep him sedated. Said the message we gave to the resident was never passed along to him, but it was already done and basically couldn’t be undone. We asked what his chance of survival was now, as we at this point never seen someone make it alive off the ventilator. He told us 15% in total numbers, but his current situation, he gave him 60%. He explained that if he had to go on dialysis or developed any secondary problems his chance dropped to 20%. We discussed when we would be allowed to see him and was told 20 days! I said, but he has been sick for 10 days already! The doctor threw out CDC and a bunch of medical facts to back his point that we couldn’t come in for 20 days as he was infected.
I was drained. Physically, mentally and emotionally drained. I am a fighter, and knew I needed to fight, but at this point I was done. I didn’t know where to start, I just broke. I have 4 girls who love their Nonno, who missed him and didn’t understand, and I didn’t know how to be there for them either. I took this day as my pity day. I hate to admit it now, but that’s what I did. I cried, I prayed, I screamed, I couldn’t function. My daddy needed me though, and that night I decided, tomorrow I'll fight! The next morning, I did what I know best, I researched! I made phone calls, I looked up the hospitals policy, ethics policy, everything I could use as firing power. Then I put my call into the hospital where I was ignored over and over again. Denied the right to make any decision, to speak to a doctor and was talked to like I knew nothing. I made so many calls to random numbers in that hospital and finally reached a patient advocate, and a member of ethics committee. This was the game changer; within an hour I had a call from the floor doctor who assured me they would honor my dad's POA. I clarified that this conversation was recorded for record proof, that it would be honored. I then started making my case. Covid was the only concern for them, I requested he be put on antibiotics, IV Vitamin C, and quinine, and to take him off Remdesivir. I also asked that he start back on his budesonide as they were withholding all home medications. He agreed to IV vitamin C if I gave verbal consent we wouldn’t sue and antibiotics but was reluctant on the other two saying he needed to speak with pulmonology and that both quinine and vitamin C are trial drugs with no evidence they help. I made my case asking, " Are you or are you not using a trial drug right now? Is this not my dad's fight for his life? Right now he has very little chance to survive, should we not be able to try something else and see?" In this call I also requested that the resident we had previously spoke with be removed from his care. They were surprised by the request, however I reminded them in their policy, we as the family have the right to make the request.
As I awaited the call from the hospital telling me what the other doctors on his team would agree to, I checked my dad's charts. We had access to his online medical portal, where they logged his entire hospital visit. This was a useful tool in many ways. When I logged on, I checked the obvious medications ordered and given. I did see where the floor doctor had a Vitamin C drip started, along with a new antibiotic. I saw some concerning medications and made a list of what I wanted to discuss my next call. I also went to CDC and found where the guideline at the time was 13 days after first signs of symptoms, making notes of this as well to throw back at the doctor who previously was going to keep us from him for 20 days. That evening the pulmonologist called, he got very defensive, very angry and irritated. I am not for a second saying I blame him; I am pushy and strong willed. My daddy's life was in his hands and on the line and I demand nothing but the best. He told me he didn’t like the idea of vitamin C, but ultimately wouldn’t fight it, as it is a vitamin. He told me how quinine would damage his heart, is unsafe and he would not give it if this was his father. To which I said, "But he is not YOUR father! This is mine, my choice." I argued my case with study after study, every bit of herbalism knowledge I know, to which he refused to make the decision and put it back into the floor doctors' hands to decide. He continued to deny giving him budesonide, by saying the pharmacy does not have it. He agreed to check with them for it and place him on one called Breo instead while we waited. I brought up what CDC says to which he back tracked and said this is the hospital policy. He ended up agreeing to allow me in on October 3rd for the first time. We debated back and forth, but by the end of the conversation we still respected each other, and I felt we compromised enough to get some care changes. This pulmonologist is actually who we chose for my dad's after care and who he sees now!
They next day we saw a few improvements in his stats, although he was still on 100% support. He was on paralytics, sedation and a high amount of fentanyl. We were allowed a video call with him at this point, the first time we had seen his face since right before he was put on the ventilator. I have seen people on a ventilator, I have held hands of loved ones as they took their last breath. I have seen someone with 3rd degree burns and totally unrecognizable, but nothing prepares you for seeing your strong, invincible, stubborn daddy laying there with a tube down his throat, swollen and lifeless. This is where you may think I am a bad mom. We allowed our kids, ages 15, 5, 3 and 2 to see him and talk to him, they did this every call we had. Let me explain though. Very rarely does it go a day they don’t see him. My babies were scared, they thought he died like their great grandpa had a few months prior. My 3-year-old even told my mom to leave and not come back until she brought Nonno back. My kids are aware of death and sickness. We have a farm, and they see it all too often. They needed to see him to believe me he was alive, and he needed to hear their voice to fight. We stayed on that video for 2 hours. Each taking turns, the girls told him about their day, how they missed him. I sat and cried, begging him to fight and come home to us. We did video calls 1 to 2 times a day after this for the remainder of his stay
Day 6, they called needing permission to do dialysis, his kidneys had stopped working and he filled up with 15 pounds of fluid overnight. Again, I felt defeated. I knew this meant his chance to survive just dropped by a lot, but I would do anything to save him and agreed. His lungs hadn't improved, and I was frustrated. I knew budesonide and quinine would help, so I set back to my goal of accomplishing these two drugs. When we spoke with the doctor that day, I told them they are withholding home medications and according to their policy they have to give them if they aren’t harmful. I also brought up that according to their policy they have to tell me if they make any financial gain by using one medicine over another. This is how I learned they gain from using Breo, but not from using Budesonide. Reluctantly they agreed to budesonide 3X a day. Within a day of doing this his breathing improved, and they were able to back the ventilator down to 50%. Over the next few days, we found where hospital notes are kept on his online portal and discovered all the notes about me and how demanding I am. You know what? I didn’t care! I'm glad I made so much noise they had to warm the other staff, because that’s what ended up saving him. On day 7 we got a new pulmonologist who kept saying he was ready to come off the vent but found a reason to push it back each day. He stayed pretty stable, continued to drop the vent settings and we thought maybe this was about over. Yes, I felt frustrated. Everyone says, "no change is good", but it felt like the days dragged and he would never get better. We had many other instances where nurses didn’t want to speak to us, didn’t want to answer our questions, it was a horrible experience. We felt that no one really cared much about him. To most of them, he was just another number. Another person who likely wouldn’t survive, and they put in what effort they had to and nothing more.
October 3rd, the morning I had been waiting for finally arrived! I get there and was informed by the nurse I wasn’t allowed in because they couldn’t change his sticker until the following day to green. I demanded the charge nurse and doctor as I had been told for over a week this is the day I could come in and drove an hour one way to get there. They explained that they didn’t change stickers from infected to clean on weekends, and while he is clean now, I would have to wait until the next day. Finally, they told me I could go stand at the door for 15min but couldn’t go into the room. When this upset me, the nurse proceeded
to tell me " Well its better than nothing, isn't it? " To which I replied, " Apparently, you’ve never been in my shoes, or you might have some compassion". When I got to the door I was overwhelmed. He was no longer on paralytics and was mildly sedated. He was awake looking around and I could tell he knew I was there. I broke right there in the doorway crying. The doctor for the weekend, who used to be my grandma's doctor, came up to me at this point, he was very kind and compassionate as was my dad's nurse. They allowed me inside the room to allow some privacy for my breakdown but said I couldn’t go to my dad's side because that was up to infectious disease. He could hear me; he was looking for me and restless. They ended up allowing me to go sit by his bed and hold his hand but continued to tell me they didn’t know how long I would be allowed in, so to be quiet and maybe no one would notice. I ended up staying 10 hours. I didn’t eat, drink or pee the entire time, afraid if I moved, they would make me leave. While I was there, they came in needing permission to do a trach, because his throat was swollen, and they couldn’t remove the vent. He had developed stiff lungs and a new case of pneumonia from the ventilator. My mom and I struggled with the trach; however, he was miserable, and we just wanted him to be comfortable. I noted a rash on him and brought up swelling to the tongue and was told he had a sore on it from biting through his tongue. That night when I got home my mom and I discussed a possible allergic reaction so planned for her to talk to them the next day.
My mom and I took turns on days with him, so the following day was her first time to see him. I had checked him over the day prior and questioned every bruised and sore on him. Looked over him from head to toe. When she went in, he was scooted down in the bed and his feet were stuck between the bed and mattress, when she moved them, his toes were black!! Every single toe had turned black. The nurses told her they didn’t know what happened, but it may be "covid toe". She requested wound care to come in, questioned everyone who came in and they all had excuses from covid toe, diabetic toe to, "we don’t know". He was still on the vent at this point but was responsive and could nod or shake his head for questions or point for what he wanted. When asked if they hurt, he would nod yes. The day came and went, with no real answers or concern to his toes. She did bring up the swelling and rash, the Dr agreed it could be an allergic reaction and stopped an antibiotic. I did my thing and started researching. He was on high doses of propofol, had been from day 1. When I looked into it, it can cause respiratory problems, throat and tongue swelling and a rash just like his. I called her immediately and said "It's not the antibiotic. He's took that
one many times before, its propofol! Have them stop it now". She got the nurse who argued and told her in her 1 year of experience it could not be propofol. My mom insisted that she didn’t care about her experience, she wanted it turned off, so she went to find the Dr, who came in and turned the drip off. He agreed it could be propofol, since he had been on it so long.
It was my morning next morning, we had an amazing nurse that day, he truly was the only reason I kept my sanity. This was the big day! The day I dreaded, felt like it wasn’t necessary and was just overwhelmed with emotions. I couldn’t wait to see my daddy's face without those tubes, but the thoughts of a hole in his neck terrified me. When I went in, I was told he was breathing on his own, the tube was still in, but he was doing all the work. I asked for someone to come do an air leak test because we had been told over and over the reason for keeping the vent in, was swelling to the throat and if he passed the air leak test and was down on support and peeps, he could come off. He looked much better, he was more alert, his swelling was down and no rash. They had put him on Benadryl to counter an allergic reaction along with stopping the suspected medication. They came in and did a leak test…. HE PASSED!! With that I began king why we can't remove it? Afterall, that’s what we had been told for 2 weeks now! Of course, we had yet another doctor by this point, who didn’t know us or our case. He told me he didn’t want to remove it in case he couldn’t breathe when it came out. But that we could wait a few days on a trach. The next possible day was in 4 days. Remind you, I was already overwhelmed, tired of stories changing and just over this hospital in general. Words cannot express how awful the experience was. But this day, God must have had his hand with me because the nurse came in and explained the whole process to me. Explained the risks of both, and then got the Dr who came in and also sat down and talked to me like a person, unlike any other person up to this point. I ended up choosing to go through with the trach because I couldn’t imagine making him more miserable 4 more days for the possibility that they will agree to remove it. I called my mom and she headed to the hospital to wait in the waiting room with me. I had already got it approved with the nurse for her to take my place with him after surgery so I could go home to my kids. He also had to have a new dialysis port put in which had not been explained to us. When the surgeon who would do that called my mom for permission, she felt he was rude, and they got off on the wrong foot. She didn’t understand what was going on and he didn’t understand why she didn’t know. He came up to the room to talk to me where he and the nurse explained what he was needing permission to do. He told me he couldn’t do the surgery if I didn’t trust them. I said " I'll be honest, I don’t trust you, I don’t trust any doctor, but I will trust that this is what's best " he asked if I could at least tell him, I trust God to guide him in the right direction and I agreed to that. In general, he wasn’t bad, it was just a stressful situation and a misunderstanding that was easily fixed. It wasn’t until 5pm when they came to take him back, this is when I realized he didn’t even have a hospital band, but more on
that later. I had to give surgery the information that should have been on his band, along with allergies. I stressed to all 6 members of surgery NOT to use propofol, as we had determined he was allergic to it. He panicked and they allowed me to ride down to surgery with them and stay with him until he was sedated. This took about 15 minutes, and he was not receiving any support at this time. I made it to the waiting room with my mom and about 10 minutes later the surgeon came in and says "My part Is done. When we got him back there, we determined he can breathe on his own. My team wanted to remove the vent then, but I had them hold off and his doctor's upstairs will remove it in the morning. He is getting the new dialysis port in now and will be back up to his room". When I say I felt God in that moment, I mean it! I prayed for hours that day for him to show me what to do, show me the right answer. All the way to that moment I didn’t feel confident it was needed, but I trusted that it was God's way. My mom went up to be with dad and he was swollen again. She asked what he had been given in surgery, sure enough it was propofol!! They began Benadryl again to hopefully keep us from a setback for removal of the tube.
The next morning, she went in, everything was good, she had the same amazing nurse we had the day prior. He told her dad was resting and he had the vent up higher just so he could relax and get ready for his big moment. There was a rude respiratory therapist who came in and questioned mom on why we were removing the vent saying " can you look in his throat and tell me his throat wont swell when that comes out? Because 80% of the time it does and it isn't pretty when we have to put it back in, it’s a bloody mess that you don’t want" to which my mom replied with "No, but I trust God to keep his throat open and to keep that from happening". I was on pins and needles all morning. Come 12:45pm they sent mom to the waiting room while they removed the tube. I feel like it took hours until 1 when they came and got her. I felt like I couldn’t breathe waiting and just prayed. She sent me a picture of him when she got to the room, and I just broke down and cried. Happy tears, sad tears, angry tears, I cried them all. He looked so weak, so sick, so bruised… but I saw his whole face, and he was breathing! The day went by fairly well, He insisted on standing up so they came in
and helped him, he was weak and couldn’t do it alone, but his determination showed! At this point they began telling us he would have to go to rehab, to which we said no. He could come home when he was able to leave, and we would care for him or have in home care.
They stopped fentanyl without weening him which caused for some hard withdraws. The next day was my day, it was a hard day for him withdraw wise. Ill spare you the details because in those moments, it wasn’t my dad talking and I knew it. But if you're reading this, don’t let it get to you when they say hurtful things, its hard I know, but that’s the drugs talking. All that aside I had moments that he was my daddy. I heard him tell me he loved me for the first time in weeks, something I didn’t think I would ever hear again. When I arrived, the nurse told me he was trying to get out of bed and had an aid with him keeping him in bed. The moment I walked in; I knew the problem. He has restless leg and since they had been withholding home medication, he hadn’t been on anything for them the entire time he was there. She got him started back on that right away. He was hungry and angry they wouldn’t allow him to eat. By this point his feeding tube had been out 4 days because he pulled it out and they couldn’t get it back in. We requested a swallow test, but it couldn’t be done until the next day. I just can't explain how good it felt to see his face. The next day he failed the test to get food, remember I said he was coming off drugs and crazy. He didn’t like the food, so he refused to eat it, he at that point didn’t understand he needed to cooperate to eat. This was also the first and only day wound care came. His feet had not been looked at yet at this point. They came in, cleaned the open wounds but didn’t bandage or anything else and that was it. My mom took photos of them that day and was informed by a nurse she couldn’t do that, but we had been daily and continued to, which doctors later appreciated.
He was receiving dialysis every other day, his kidneys were working some so we had been told, and it was charted that they had been producing urine. He had dialysis on my mom's day, and they told her he probably only needed a few more treatments at this rate. so, the next morning I went in and was told I couldn’t come in because he was having dialysis. Prior to this we had been in the room with him during dialysis, I asked why I couldn’t be with him and was told they didn’t allow it. I got upset, not my proudest moment, but it did accomplish one thing. Up until this moment the doctor for his kidneys had yet to speak to us even though we asked many times. In this moment, I demanded I see the doctor or else I would go downstairs to find the patient advocate to file yet another report. I was told the doctor would be right out and to wait for him in the waiting room. He came out and told me my dad's numbers had gotten worse, and they had to do dialysis. I asked about kidney function and how we had been told they are getting better. He tells me that isn't true, that his kidneys are not functioning at all and never have. He said all his organs had shut down and kidneys are the last to recover, if at all. This was strange to me, because we had never been told all his organs had shut down. In fact, we had always been told every organ was working properly except his kidneys due to the medication injuring them. I left and went for a walk at the park right by the hospital to calm down and clear my head. When I returned, I went in and had a great 2 hours with dad before they came in to do labs. They said they were sorry, they forgot to get blood that morning from him. I asked for the nurse to come in and asked her how they knew he needed dialysis today based off his morning labs if they never took blood. She left and came back about 30 minutes with the doctor who says, " I'm terribly sorry, I was given labs and told it was his, he got someone else treatment this morning". I couldn’t believe it, seriously blew my mind that they didn’t double check before running dialysis. If you are unaware of dialysis, it is actually very hard on the body and kidneys, my dad's body didn’t need more stress at this point. I filed a complaint with the hospital for this and they switched his care to another doctor. I questioned again about a hospital band, thinking if he had one, it may have prevented this issue. They brushed it off like no big deal and they would do it later, but never did as long as he was on covid ICU. That night I was checking dad's online portal and saw they had ordered an antipsychotic to give him, I had my mom call and tell them we did not want him to have that. They promised they wouldn’t give it to him but wasn’t happy that we knew about it. Within 15 min of calling, I could no longer log onto his portal. I called back and asked for the charge nurse and asked
about this. She claimed it must have accidently been switched to hospital use records only and said she would get it fixed. Believe what you may, however I believe this was done because we called.
The next morning, I went in, dad had found his phone that night and had been calling us off and on all night. When I was on my way, the video called my mom and was trying to tell her something about the nurse, when the nurse came in, took his phone away from him and told him he couldn’t call people while in there before she hung up. I was aware of this before I arrived. She told me when I got there that he had been crying and upset all morning. When I got in there, he immediately asked me what day it was, I told him, and relief washed over his face. My birthday is in October, he knew it was close and thought he missed it and when he asked anyone the day, no one would tell him. This nurse was a whole new level of rude, she was so bad I had another nurse tell me I needed to speak with the charge nurse about her behavior, she even went and got her for me. After that, it got a little better and they even put in a request to move him off ICU. That evening they moved him off ICU to a regular room. They never changed beds; He was moved on his broken covid ICU floor bed to a supposed clean floor. When his new nurse on that floor came in, she asked about the broken bed, and I explained how it was broken on covid floor too and she freaked out that he was moved on a covid bed. She also got him a hospital band right away and was not happy about him not having one. He was on this floor 5 days until he got released to go home. He was weak, it was hard, but he didn’t go to rehab as they told us over and over, he would, 2 days later I took him in to have the dialysis port removed.
As soon as we got home, I started him on herbal medicine. I had spent days getting stuff made up for him. Within 3 weeks his kidneys went from 17% function to over 60% and fully recovered. He came home with collapsed lungs they may never recover and 2 weeks later they had inflated like they should be. I managed to save 9 of his toes, unfortunately, 1 the infection had made it to the bone, and I was too late, he had to have it removed and has some nerve damage. They finally determined the cause was in fact loss of blood flow when circulation was cut off. I know many of you reading this may think I just hate nurses and doctors. I absolutely do not. I do hate this hospital and the treatment my dad and family endured. I hate the fact we had so many rude nurses and doctors. I hate the fact they believe in one protocol and never want to change it even when they know it isn't working well. I hate the fact this protocol and the neglect he received at this hospital nearly cost his life. I hate that covid even exists. However, I respect the medical field. I respect the nurses and doctors who risk their life daily to help others. I even respect those whom I feel neglected my dad. I understand everyone is overworked and don’t believe anyone meant to cause any harm. But I believe our story should be heard, so should everyone else. I had dozens contact me during this time because they had similar treatment with a family member. It's happening, and it needs to be talked about. This Is believe it or not, the short version of our nightmare, and at some point, I will share more. It's been unbelievably hard to sit down and write this much out. The raw emotion and pain returned like I was relieving this nightmare when I sat down and started typing. We are thankful daily that God was with our family and that I had the fight in me to fight for his treatment and life. My dad returns back to work the first of February, it finally feels this nightmare may be coming to an end.
If you’ve made it to the end, Thank You! Below is my Facebook page for my herbal business where you will see even more posts and information if interested. Stay tuned for a post on how the remaining family members avoided covid. And how those who did get sick got through it naturally. Along with what products i have made since to help with this virus and my dad's recovery!
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