On May 8th, 2021, we were headed home from a turkey hunting trip to Oklahoma. We had just crossed the state line and my husband, Shawn, began to sneeze. He joked that we should move to Oklahoma because he never sneezes there and the moment we cross the state line, BAM, the allergies are back. He continued to feel poorly throughout the weekend and into the next week.
On Thursday, I went to a fundraiser for the Sarah Huckabee Sanders campaign. When I got home that afternoon, he was in his chair upstairs and freezing. I went downstairs and gathered up Tylenol, Ibuprofen, and an antihistamine. I tried to convince him to see a doctor, but he said he didn’t want to go. He still thought it was allergies and I don’t think either of us even considered for one second that it could be Covid.
On Friday, Shawn got off work at 11 a.m. as usual. He told me he was going to work on a broken pipe at the farm on the way home and did I want him to wait on me. Can’t even remember where I was that day, but I was picking up our grandson on the way home, so I told him to go ahead without me. But he called me from the farm and said, “something is wrong, I almost passed out”.
I had already picked up my grandson to stay the weekend, and at first, wasn’t sure if I should turn around and take him home. But we decided to keep him and the two of us stayed downstairs just in case Shawn had “something contagious”. But now I’m getting more concerned with his dizziness. But he won’t go to the doctor, which is typical. He rarely got sick and when he did, would rather fight it on his own.
On Saturday morning, I told him we could just go to Primecare in Searcy. But he refused. I went to a baby shower and my niece’s graduation party, but I told him that if he wasn’t better by the time I got home, we’d go to the doctor whether he liked it or not. He agreed and I left.
Shawn’s mother called me that afternoon while I was at the graduation party. She had been trying to reach him and was worried. I told her he was still sick and was trying to get some rest. She said “well Donna, we took Steve to the doctor because he thought he had a kidney infection and they made him take a Covid test and it was positive”. My head literally spun! I called to let him know and he went straight to Cabot ER, which is an emergency room hospital that is open 24 hours. They don’t admit patients and don’t have rooms.
I gathered up my grandson and my sister who had ridden there with me, dropped her off and I headed home. Before I got there, he called me with the news. He was Covid-19 positive. They sent him home with meds and an inhaler. I asked him was that it? And what else? He said “that’s it”. They said I’d be better in a few days.
By the following Tuesday, May 18th, he told me he was feeling significantly worse, so we headed back to Cabot ER. They gave him an oxygen mask and not just an inhaler, plus antibiotics. I ordered Quercetin Zinc Immune Support as recommended by my cousin.
On Wednesday, he barely slept and was getting fatigued.
But on Thursday, realization hit, and we are really worried. It’s obvious now that he isn’t handling Covid the way everybody else seemed to. (Neither of us realized it was the Delta strain yet and I had only heard of it that very morning.) I mean we lost our friend John, but he had diabetes. Shawn was healthy, other than being a little overweight. I remember feeling like I was in a bad dream, no a nightmare! This can’t go badly. He’s healthy.
So we called Cabot ER to let them know he’s getting worse and what can we do. They said take him to the ER at an actual hospital. But Shawn didn’t want the ER, so I called his doctor in Jacksonville. They said they don’t see Covid patients at all. I wanted him to go to Baptist because I didn’t like Unity, but Shawn said there was no way he was going to Little Rock ER and wait all night, but he’d go to Searcy where it was less busy. So I called a friend of ours who is a nurse practitioner for one of the Unity Health Clinics and asked for her opinion about Unity Health in Searcy. She said they can do the same things that can be done at any hospital in Little Rock. I asked if she’d take her children there and she said yes. That’s all I needed to hear and off we went. At this point he said “no matter what happens, you have to promise me that you won’t put me on a vent”. I still remember the look on his face. He was serious! He said that when people go on the vent, they usually die and if he does live and doesn’t have the ability to do things with his kids and can’t go hunting, he didn’t want to live like that. I told him to stop talking like that. We are going to get the right meds and get you better.
When we arrived that evening, his pulse ox was 89%. They just had us wait in the ER waiting room alongside everybody else. I kept thinking to myself, why are we just out here with everybody else when they KNOW he is Covid positive. Yeah, we had a mask on, but surely they know that doesn’t guarantee he isn’t spreading it. So, we found two seats away from everybody else.
They finally called us back and a male nurse came to start his chart. A friend who knows medicine and had Covid earlier in the year told me to ask for monoclonal antibodies asap. I did and he said he doesn’t qualify. I asked what do you have to do to qualify and he said, “well you need to have other comorbidities and you said he has none, correct”? So, he can’t get a life-saving measure because he isn’t sick enough??????? Now I’m getting nervous but trying not to upset Shawn. We insisted he get the questionnaire and let’s make sure. It was a no. He doesn’t qualify because he’s too healthy. Ironic!
A relative who had Covid earlier in the year received Convalescent Plasma and credited it for saving his life, so I asked about that. The nurse said they will certainly put in a request and let us know. Robyn next suggested we ask about hydroxychloroquine and they said they no longer treat Covid with this medicine. So now that’s a no for Monoclonal antibodies, Hydroxychloroquine and a maybe for convalescent plasma. So here goes nothing… Ivermectin? It’s a big no to that one as well.
The doctor came in after he finished his rounds in the hospital and we went through all the same questions and confirmed everything the nurse said. He promised to get something going on the plasma and explained that there was a shortage. He told Shawn he wants to admit him to get him on oxygen and he’d likely be home in a day or two. I asked does that mean we could just go home? And he said yes, but we’ll have to send him home with oxygen and it could be tomorrow and if we go home without it, he could get worse and end up back in the ER. I still don’t understand why that didn’t set off 5000 alarms in our heads, but we TRUSTED them. And I didn’t want him to have to come back and go through this again. As soon as Shawn heard “come back to the ER”, he was over it. He said fine, let’s get it done ‘cause I don’t want to come back.
So, the nurses came to get him and said “Oh you can’t come”. I had heard about that, but I guess I was just hoping things have changed. One of the staff said, “You can see him when you come back to pick him up.” Within seconds they were handing me his things and wheeling him away. I told them to stop because I hadn’t told him bye. So they stopped and when I leaned over him, he groaned because he said I was putting pressure on his chest and he couldn’t breathe, so I kissed him lightly and quickly and backed away. That was my last kiss until I told him goodbye on June 17th. It seems so unbelievably cruel on top of everything else.
On Friday, May 21, I called and spoke to Shawn’s nurse to get a report. Among the tests they ran was a Serum Ferritin test. I asked her what that meant and here is what she said: “That’s just an inflammatory marker that’s present no matter what you came in with. It really doesn’t have anything specifically to do with Covid, other than it’s a good thing if it goes down.” I was making notes of every word and wrote down her response verbatim.
I didn’t think anything more about it because she made it sound unimportant. I know now that it’s actually VERY important and is an indicator of how sick he is/was. I learned through research that most Covid patients who have elevated levels don’t recover. If I had known, I would have taken him home right then. Maybe I could have taken him to a hospital that would try medicines such as Ivermectin. Maybe. The results of his Serum Ferritin test, as I found out later, was 1710. The normal range for a man is 0-350ish. It was important, after all.
Shawn called me on Sunday morning and asked me to bring pillows from home because the hospital pillows were terribly uncomfortable, and his body was aching. I asked if he was getting up and moving around like the people at Cabot ER said he needed to be and he said no. Not at all. He said they had him lying on his back and the pillows were becoming flat in seconds. I drove to the hospital to bring him the pillows with clean pillowcases. I packed them in large garbage bags and sealed them up so that in case the staff would freak out not wanting to touch his belongings from home. I also wrote his name on a piece of paper and secured it to the sacks. When I went to his floor to take the bags, I stood at the nurse’s desk and there was only one person there. She was focused on her computer screen and didn’t acknowledge me, so I asked her “excuse me, I am Shawn Spakes’ wife, and he has asked for his pillows from home, can you be sure he gets them”. Still no response. Finally, I leaned over and around the counter and saw that she was a young lady with dark hair. I asked again and she pointed to the counter I was leaning on with the bag of pillows and said… I’m going to need you to back up and NOT touch anything. I was speechless. So I asked again and with attitude she said “yyyyyyyeeeeeeeeeeessssssssss, just put them there.” It’s hard for people who haven’t been in this situation to understand how others treat you at the hospital. Hospitals are understaffed and attitudes are terrible. On top of everything else, he’s claustrophobic and the mask they had him on was causing stress and therefore a lack of sleep. When people would ask me how it was going, sometimes all I could say is, IT’S A LOT.
Tuesday, May 25, 2021 – 12:13 am – HIS FIRST DEATH
On Tuesday, May 25th at 12:13 am, my cell phone rang and awoke me from a deep sleep. I saw on the caller ID that it was Unity Health and called out to God, No, No! A nurse whom I believe said her name was Karen or Kathy was on the phone. She asked if anyone had called me from the hospital. I said “no” and her response was an irritated “I was afraid of that”. She asked me if I could get dressed and come to the ER and she’d tell me what had happened. I was already dressed. I had been going to sleep dressed just in case ever since he was admitted. I remember pleading…… “no, oh my God, is he alive? Please tell me he’s okay! She proceeded to tell me that when she came around to the window to take his vitals, he wasn’t in the bed. She rushed in and found him on the floor. She said he had no pulse, so she called for a code blue. She said, “Your husband is a large man, and it took four of us to get him back in the bed, which we had to do in order to verify he had no heartbeat.” It was taking too long to get the defibrillator and I climbed up with him in the bed and did chest compressions. We got him back and took him to the ER. He was able to tell us his name and what year it is, so I don’t think he was out that long. It was a close one and you need to go straight to the ER. I got to the hospital about 30 minutes later and the bed was empty. I almost fell to the floor, but a lady rushed behind me to say he was moved to CCU. When I got to CCU, the doctor soon came out to the waiting room. He motioned for me to have a seat and said “your husband was found on the floor of his room. He is very lucky that the nurse found him before he lost consciousness.” I couldn’t believe what I was hearing. I said, “No, that isn’t true. He did lose consciousness; he had no pulse and no heartbeat. The nurse had to do chest compressions and got him back.” His eyes got wide, and he started fumbling with his clipboard and shuffling the pages back and forth. He said, “well I just interviewed the nurse and she said he was conscious”. I looked at him with all the restraint I could muster and said, “Either you are lying or she is. I’m pretty sure it isn’t her. I want to see my husband… NOW.”
He was sitting up in bed and was able to text me when I got back there, but he was now on 100% oxygen.
Later that day I asked Bryson, the hospital administrator, to transfer him to UAMS or Baptist and he said he would put in a request. Dr. Wagner said they needed me to sign some paperwork to put him on the vent. I told them no because he made me promise not to do it. Dr. Wagner then told me if I don’t, I’m letting him die. I can’t tell you what that did to me. I felt like I was being ripped into shreds with a dull knife. I love this man more than anything and this doctor is telling ME that I’m letting him die?!!!! I was physically ill and from that moment on, I think I was largely in shock. After that, I just told them to ask him because it’s his decision. I remember once, they walked in, and I saw him look at me and back at them and nod his head no. It’s like they just wouldn’t accept no for an answer. Why? Why are they so intent on getting a yes? Shouldn’t they accept what the patient requests? They questioned me repeatedly about the vaccine. Have I had the vaccine? Why haven’t I had the vaccine? They’d say, “We don’t get people in here if they’ve had the vaccine.” You should leave right now and go get it. You can get it at Walgreens. It just went on and on.
On Wednesday, May 26th, I asked Bryson about the transfer. But he said the request was denied because they didn’t have beds available. In the meantime, I had already called UAMS myself and was told they can take him, but the request has to come directly from Unity Health. When I told Bryson that, he said it doesn’t really matter anyway, because unless he’s on a vent, they won’t take him. He’s on 100% oxygen and nobody will transport him due to safety issues. At this point, I realize I have no options.
One day the Hospitalist came up to me and said something I knew I must immediately write down to remember. I thought at the time, it was the truth. “We have no cure for Covid, so we are doing what we DO know about treating the damage the “VIRUS” causes until Covid leaves your body”. He said Covid causes pneumonia and the lack of oxygen wreaks havoc on your organs, including kidney failure, collapsed lungs, internal bleeding, infections, etc.
On Thursday, the doctors told us that they want to move him to Alltech for long term care. I asked what that meant, and they said it’s a better place for someone to be once they are stable. And they said that I can be in the room when he’s there. (I think they told me that because they knew I was wanting to be in with him so badly and they thought that would entice me.) His mother threw a fit because she said that meant they had given up on him and since we wouldn’t put him on a vent, he was going to die, and they knew it. She began to plead with me to put him on a vent.
I cannot begin to describe the gut-wrenching pain of watching as a Mother loses her only child. I cannot begin to tell you how hard it is to face this Mother and not be able to give her what she asks for. But my husband trusted me to keep my word.
In the meantime, the doctors told me that his insurance company denied long-term care anyway, so he must stay in CCU. So, I asked them that if they were willing and able to move him across town safely, then why can’t we move him to another hospital? What’s the difference? His mother was sadly correct about this. They gave up on us accepting the vent and wanted to just get him out of there and I knew it.
A day or two later they said they needed to move him to a special room and told me it has something to do with keeping his Covid from getting circulated throughout the hospital. They also said they don’t usually allow visitors for this much time and this long and other patients are at risk, so we need to move him. I remember thinking this is crazy and I don’t understand it. I can’t remember for sure, but it seems like within 24 hours they pulled me aside and told me that if we don’t put him on a vent NOW, he will die within a few hours. I told them that if they’d let me see him and be with him in the room, I’d talk to him about it, but I would never tell him what to do. They agreed. Then after a few minutes and the lady who needed to get my signature on the documents still wasn’t there, they said there wasn’t time, and they moved his bed to the window so that we could see each other up close. He pointed at me, took his mask away and said, “you decide”. I was crying so hard I could barely see him. And then the nurse whispered in his ear and I saw him nod yes. Later the nurse told me that he told Shawn “not to put that on you”. We put our hands together on the glass and he said, “I love you” and I said, “I love you baby.” His Mother and son Hunter also put their hands on top of mine as they also told him they love him. This, as it turns out, would be the last time we spoke to him and knew he heard us. When his hands fell from the window, he turned his palms up as if to say, “God take me”. I believe in my heart that he knew he’d never recover.
Finally, the lady arrives, and she put a gown on me from the back and another from the front. She put an N95 mask on me and then another that looked like something from a science fiction movie. Then rushed me in the side door to the room and finally, after all this time, I touched his hands and face and told him I love him, I’ll always love him, and I’ll be here when he wakes up. He never opened his eyes and as they gave him a sedative, which I believe was fentanyl, his face grew oddly still. I just stood there rubbing his face as they got him ready for what they wanted all along, the ventilator. They let me stay in until it was done and then walked me out and removed my goodbye garb.
When all was done, that same male nurse told me that Shawn was now approved for transport to Baptist Health in Little Rock, and he was an ECMO candidate. Once they contacted the pilot, they allowed me to be with him until he was in the elevator. No mask, no gown, just plain clothes. It still doesn’t make sense to me.
As soon as I got to Baptist hospital, the cardiologist met me in the family room. He said he was so glad to get Shawn and only wished he had gotten here sooner. When I told him “Me too”. I had been trying and was told they didn’t accept him. He told me that wasn’t true because all requests go through him, and he never got one. Then he told me “Look I don’t know what happened, but he’s here now and we will try our best to save him”. He also said that on the vent, he only had a 5% chance of survival (the first time I heard that percentage), but on ECMO, he has 50%. I cried so hard because a 50% chance was more hope than I had in days! They told me they needed to stabilize him from the transport and get everything ready to do ECMO the following day and I should be back around 9 a.m., although he couldn’t tell me when they would be ready.
Tuesday, June 1, 2021 – At 2:30 pm Shawn was put on ECMO.
Keeping your emotions in check while your Husband is dying is a special kind of torture. On my third day at Baptist, one of the nurses told me to talk to my mother-in-law about her visits. She said that she absolutely must stay quiet. I asked what had happened and she said, all I can tell you is that she was loud and if it continues, we won’t be able to have her back. God forbid a Mother make noise as she speaks to her dying son. The nurse says it upsets others on the floor and disrupts their work. A couple of days later, I heard a woman crying and pleading for her husband. I saw that lady in the canteen later that morning. She said they threw her out for getting too loud. I tried really hard to stay calm no matter what happened for fear of being thrown out as well. Look, I understand, I really do. I’m just saying WE WERE LOSING SHAWN. We did our best!
The days seem to have lasted at least 100 hours and yet vaporize in seconds at the same time. He seemed to be doing well on ECMO for several days and then things begin to unravel. Apparently, the connection in his neck was dislodged during bed changes or something and he was bleeding internally. By the time they figured it out, it was too late, and his organs were failing. They just didn’t tell me what exactly was going on. I remember asking about his kidneys and the jug on the floor at the foot of his bed. The nurse spouted off something I didn’t understand, but I took a photo of it. When I went for water and came back, I noticed it was moved to the other side. When I asked why they moved it, he said it was in the way.
On June 16th, they said they had everything reconnected and he was stable again. I went home thinking that maybe I can sleep, and things will be better tomorrow. I did. But I woke up at about 4:30 am on June 17th wide awake and troubled. I got dressed and went on to the hospital. I was on the phone with my sister when the call came. The nurse said the doctors need me to come to the hospital as soon as possible. I said I’m already here in the parking lot. Please tell me it isn’t too late. He said I can’t tell you anything except he is still alive. I ran straight to his room and there were several people gathered around him. A series of what-ifs were presented and tossed out and when one of the doctor’s eyes caught mine, I knew. He came out and said there really isn’t any more we can do and I’m so sorry. I’ve never seen a doctor cry, but he had tears in his eyes. I told him to do whatever they have to do to keep him alive until his children and Mother can be here. He did. They did. We all said goodbye and were able to gather around him, pray over him and love on him for just a few more minutes. Time of death, 1:50 p.m. I left home a wife and came home a widow.