Well friends, it has been a little while since I was able to talk to you and I’ve missed it. Lots of things have happened and we have a lot to catch up on.
Just a few days after Christmas, I went to see my Cardio-Thoracic Surgeon, Dr. Bruce Rank. I was having a lot of pain in the area of my pacemaker. He said it was because I have lost all the fat padding that lies under your skin, and the pacer was rubbing against the underside of my chest and irritating the already hypersensitive nerve endings. After much discussion, with Susan asking if they could use silicone implants like they use in breast implants, we decided the best course of action was to move the pacer a little to the left, into the area that is just before your shoulder. He thought he could plant it a little deeper, clean out some of the scar tissue therefore relieving some of the pain.
The procedure was a simple one and I was only going to have twilight sedation administered. This was because not only was it just going to take a few minutes to move the pacer, as MSA patients all know, my respiratory system is very fragile, and any sedation that would require inserting a tube down my throat to assist in my breathing risks the chance of not being able to be taken off the machine. Surgery went as planned and immediately following the procedure, I felt great! Gobbled down some peanut butter crackers and sierra mist and asked Susan to call our friends, Jo and John to see if they wanted to meet for lunch. She was reluctant, but we met at Ruby Tuesdays and spent about an hour or so chatting and discussing local events. As the time wore on, the numbness started wearing off and pain was setting in.
Note to myself, well to everyone…when you come out of surgery, you are numb and still under the influence of happy gas. It isn’t real. It doesn’t last. Don’t go to lunch, go home and rest.
After learning that lesson, we went home, Susan helped me change into my pajamas, gave me a pain pill and an ice pack, and I went back to sleep. Normally, this procedure would not be a big deal, but I have nerve hypersensitivity, so the pain was more pronounced and I was taking the Vicodin as often as prescribed.
Tuesday was not any better and that afternoon we called Dr. Rank’s office to see if there was another pain medicine combination that would be effective. We knew we couldn’t increase the Vicodin due to the constipation side effect, so we were alternating it with Tramadol. Dr. Rank’s physician assistant called back and said they were going to prescribe Percocet, but he would have to get a script signed and he would call when it was ready.
Dr. Rank had instructed us to schedule a follow up visit in his office in two weeks. This was now Thursday, and since we hadn’t heard back from his office concerning the new prescription, Susan called them. She spoke with the receptionist to schedule the appointment and asked if the prescription was ready. Pam couldn’t find it, so she transferred the call to the physician’s assistant. Susan described my condition, including the fact that I was not being able to urinate. He suggested she take me to the emergency room. It’s a known fact that when you don’t feel well you don’t eat or drink right and he was concerned I was becoming dehydrated. She asked if she should take me right away, or after she got off work. He didn’t seem to think it was an emergency situation, so told her to have me drink as much fluid as I could tolerate, and if I was still not able to go to the bathroom, take me to the ER when she got home.
Well I drank as much water as I could take in those three hours. Four and a half 16.9 ounce bottles and nothing was changing. Susan called me on her way home to see if I was able to eliminate, and I told her I hadn’t. She said we were going to the ER, so I needed to get ready. I decided to take a shower and had just finished getting dressed when she arrived home.
KetteringMedicalCenteris, as far as I am concerned, the best in the area. We checked in at the reception desk and Susan explained my fight with MSA and the reason we were there. She reported to them I was becoming increasingly weak. A nurse called us into the triage area to get my vitals. I was starting to have a hard time focusing, and Susan told the nurse that I was showing signs of what we call a MSA episode. The nurse said there were no beds available and they would call us back as soon as they had one available.
We sat in the waiting room for awhile. It seemed like a long time. Susan kept asking me if I was ok. I would say yes, but she knew better. She went to the desk to inform the staff there that I losing consciousness. They told her that there was one patient still ahead of me, so it wouldn’t be much longer. Susan kept talking to me; trying to get me to focus….that’s all I remember.
I kept talking to Frank, trying to keep him from going wherever it is that we lose him too. I was trying to be very discreet since there were a few others in the waiting room, including children, and when Frank has these episodes, they are scary for adults, let alone children. All of a sudden I noticed his eyes started jerking in opposite directions and I knew he was going fast. I jumped up to stand in front of him to start what I do to try to bring him back. I hold his face in my hands, mainly to hold his head up, and literally in his face I call his name, urge him back, tell him he’s ok, anything I can do to get him to regain focus and consciousness. He wasn’t responding, and not wanting to yell in the waiting room, I did get louder and was snapping my fingers in his face and lightly slapping his face. Suddenly it went from bad to worse. His entire body just went limp and I was struggling to keep him in the wheelchair.
Then out of no where, I was surrounded by emergency personnel. One nurse reached for his pulse and called out she couldn’t find one and off we went literally running to the treatment area. They yelled for the receptionist to open the door and that they were taking him to the “beach”. They each had little communicators on them and they were calling instructions and that they were going to need assistance in getting him on a gurney. Three or four large male staff members came to us and one started to pull him up by his arms. I yelled that he had just had a pacemaker revision so they couldn’t pick him up like that. So one guy wrapped his arms around Frank from the back and two other grabbed the lower part of his body and tried to put him on a gurney.
Frank is down to just about 163 pounds, but they were struggling because he was dead weight. They got him on the edge of the gurney, but he was sliding down toward the floor. I instantly dropped to the floor to hold him up. All I can remember was that I wasn’t going to let him hit the floor and I had my head up against someone’s rear. We all held him there for a minute while more staff came to assist. Once they got him on the gurney, they went running through the hall, still shouting orders. I was following them when a man came to me, put his arm around my shoulder and introduced himself as John, the physician assistant. He said it appeared that Frank was coding and asked if he had any orders. I hesitated for a split second and then answered, “Yes, he has a DNR.” He asked what type of DNR. I told him it was a DNR CC. He replied, “Comfort care only?” I affirmed. He asked me if I knew what that meant and I said yes. But I also told him, “I have a health care power of attorney and short of a ventilator or shocking his heart, I call the shots. You are not going to let my husband die tonight.”
John went into the trauma room to tend to Frank. It was a flurry of activity. Just like in the movies. They were taking his clothes off, starting IV’s, hooking him up to machines, oxygen and there were lots of voices talking. It appeared to me as utter chaos, but they seemed to know what they were doing. A nurse came over to me and asked if I was ok. She ushered me to a seat in the room with Frank and said I could sit there, we’d be out of the way, but I would be able to see everything they were doing and she would explain anything I didn’t understand. I was only able to sit there for a few minutes and then went out to the hall. The whole front of the room was glass, so I could see what was happening, but I could only think to call Pastor Clayton to get a prayer chain started. I knew that was going to be the only thing that was going to save him that night.
They continued to work on Frank. He was unresponsive for nearly an hour. I think they were just trying to assess what was happening, giving medications to keep him going because with his DNR, they can’t give chest compressions, can’t intubate him, and they can’t shock his heart, not only because of the DNR, but because of the pacemaker.
All of a sudden the flurry of activity stopped and they stepped back from the table. I stared wide eyed at them. I thought it was over when a voice asked, “Are you Susan?” I said yes. They said, “He’s calling your name.” I can’t ever find the words to tell you how I felt at that moment. In just a few split seconds my mind went from thinking my husband was gone, to finding out he wanted me. I had been crying, so I turned away, wiped my tears, said to myself, well I thought it was to myself, but was apparently out loud, “Happy face, happy face”, and walked past the nurses and doctors to the head of the bed.
Frank was not able to see to focus on anything, so I just stood at the head of the bed, stroking his hair, letting him know I was there and he was going to be okay. Tears were streaming out of both our eyes. God had granted us more time together, and I will be forever grateful.
After it was over and Frank was stable, the Physician’s Assistant came in and told us that Frank had him worried. He had never had a patient that suffered from MSA so he didn’t know what to expect. He said he had been sure that he was going to have to “pronounce him”, referring to a time of death, when Frank fought back.
I slightly remember the rest of the night. I remember being hungry and them bringing me a sandwich. Another doctor came in and introduced himself as Dr. Limm. He said he was going to admit me for observation. He said when he received the call, the staff was trying to describe what MSA was, when he told them he had had a patient while in private practice that had suffered from this disease, so he was familiar with it. I can’t help but be amazed that I survived this night and God sent a physician that could properly assess my condition to watch over me. God is full of miracles.
It was well after 2:00 am when they finally got me in my room. I was so exhausted, and could tell by the look on Susan’s face, she was too. I tried to get her to go home, but she was having none of that until they had me settled and she had met the staff that would be watching over me. Within a few minutes, Jim the nurse and Amber the aide came in to get me settled. Susan seemed confident that I was in good hands, and gave me a kiss goodnight. She hesitated leaving. I didn’t know why. All I knew at that time was she had brought me here to get fluids for dehydration, and that’s what I was getting. It would be two days before I knew what happened that night in the ER.
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