9:30 a.m., Thursday, July 15, 2004
"Dr. Johnson will do the surgery," Suzanne said. "He came by to see Mom yesterday evening after you left. Mom likes him."
I was glad to hear that.
It was to be just a routine exploratory surgery to obtain a larger tissue sample of Sylvia's lung to determine what is attacking her body. We had prayed. Now all we could do was wait, and we were told to do that in the "heart tower."
Suzanne and I left Sylvia's room on the seventh floor, stopped by the Main Entrance Information Desk for directions and then made our way down the long corridor to Owen Heart Center. A number of patients' families were already seated in the large Waiting Area. We went directly to the circular Information Desk and gave one of the hospital staff our information.
"They took Mom early just before Dad arrived. It's still a long time before her surgery. Would it be possible for him to see her?" Suzanne asked.
The lady said, "No."
We sat down to wait. There were plenty of magazines on the side table, but I couldn't get interested. I kept thinking about "if only..."
If only I had not stopped by Dr. Cagen's office for a chiropractic treatment on the way to the hospital. Before I left home at 8 a.m., I called the hospital and told Suzanne that I planned to do that.
"That will be fine, Dad. Mom's surgery is not until noon." Suzanne had said.
I shared my regrets with Suzanne. "If only I had come straight here, I would have been with her when she left for surgery."
"I told Mom that you had called. She was glad that you were going to the chiropractor. She said you needed to do that."
Learning that Sylvia knew that I was on the way, and that she was in agreement with what I planned to do was encouraging, but my mind drifted back to other times I was not there for her.
Like 1954 when Sylvia gave birth to Suzanne in West Palm Beach. I was in the Air Force and stationed in Korea. I really missed being with Sylvia during that special time.
In 1957 David was born. I was in art school in Boston at the time. Sylvia was at home in Waltham. Since she had the car that day, she drove herself to the hospital. Once again, I was not there for her.
Our daughter Robynne was born in Orlando in 1958. Sylvia called me from the doctor's office and said she was going across the street to the hospital and check in. I asked her if she wanted me to come too.
She said, "No, you don't need to."
I took what she said at face value and kept working, but I couldn't get my mind off what Sylvia was going through. After a while my supervisor encouraged me to go to the hospital to be with her. I did, but by that time she was already in the delivery room, where husbands were not allowed back in those days.
In the waiting room I was closer than I had been the other two times, but Sylvia would not have been aware of that.
"How are you doing?"
My thoughts were interrupted, and I turned to see who was speaking. The person was standing and I was sitting, so the first thing I noticed was the Mission Hospital Clergy badge on his chest. Was this the hospital chaplain, I wondered. Then I looked up to see a familiar face. It was Don Waters, pastor of the Carson Creek Baptist Church in Brevard. Sylvia had worked with his wife Joan at Jerome & Summey Insurance. He had come to Asheville to be with us, but we did not know he was coming. Suzanne and I were glad to see him, but little did I know at the time just how important his loving concern and support would be on this day.
Don prayed with us and helped us pass the time.
Sylvia's surgery was scheduled to begin at 12 noon. When that time came we thought the operation was in progress. Several minutes later, Mark, the hospital chaplain came over, introduced himself, and said, "Her surgery hasn't started yet. It may be a while. Why don't you all go to the cafeteria and eat lunch. I will come and get you if you're not back when she is out of surgery."
Don urged us to do that, and insisted that he buy our lunch.
We were almost finished eating when Mark came to the cafeteria to give us the news: "There is some unexpected bleeding."
Unexpected bleeding?!! We could tell that he was very concerned. We were too! So we prayed again. And then we returned to the Waiting Area and waited...
Finally, the surgery was over. And Mark led Suzanne and me to the Family Counseling Room where we would meet with the surgeon. Don said he would wait for us in the Waiting Area.
A few minutes later, Dr. Alan M. Johnson came into the room, closely followed by Dr. Pritchard.
Dr. Johnson shook our hands, and sat down and leaned back in one of the chairs across from us. He appeared to ve very tired.
He told us that as soon as he made a small incision between the ribs on Sylvia's right side in order to remove larger tissue samples from her lung, blood spewed out and also came up into her breathing tube. They couldn't stop the bleeding so they opened her chest to determine the cause and found that the lower lobe of her right lung was necrotic and the artery in that area had fallen apart. Dr. Johnson felt extremely fortunate that Sylvia survived the surgery, because there were many opportunities to lose her during that process. He said that if he had not had the specific people that were on his team that day, there is no way they would have been able to save her life. He considered removing the necrotic tissue and possibly even the lower lobe of her right lung but decided against it because her condition was too critical.
They had given her four units of blood.
Dr. Johnson said he had never seen anything like it. Dr. Pritchard had thought it might be a fairly rare lung disease called BOOP, but neither doctor recognized it in Sylvia because they had never seen a case so far advanced. Dr. Johnson said he got some good samples, but it would likely be 48 hours before they would get the results back from the lab.
Suzanne and I returned to the Waiting Area downstairs. A few minutes later, we were allowed to go to the Cardiovascular Intensive Care Unit (CVICU) to see Sylvia.
The sight of Sylvia heavily sedated and on full life support was quite a shock!
Linda, her nurse, introduced herself and was explaining how they would be taking care of her, but I couldn't take my eyes off Sylvia! And the room was full of life-support equipment! The large ventilator tube in her mouth and down her throat. The chest tube in her side to give air that was escaping through the hole in her lung a place to go and the machine that went with that. The many IVs connected to her. And the attached wires that were constantly sending messages to a large computer display. I couldn't fight back the tears, and it was all I could do to keep from sobbing.
"Mr. West, are you okay?" Linda asked.
"Yes... No, I'm not okay -- because she's not okay."
A few minutes later, we went back downstairs and outside to use our cell phones. Suzanne called Robynne, my other daughter. I called my son David.
David asked if he should come. I hesitated at first because he had just driven from central Florida to western North Carolina to see Sylvia in the Brevard hospital and back home again a week ago, and I knew how busy he was. I guess I was still in shock. I knew it was only by the grace of God that Sylvia had lived through the surgery, but I had not yet faced the reality that she was still at death's door.
I turned to Suzanne, who was standing nearby and still on the phone with Robynne. "Suzanne, David wants to know if he should come." She nodded "Yes."
"Yeah, David --" Suddenly my voice broke and tears blurred my vision as I continued, "C'mon!"
I learned later that David was in a business meeting, and wouldn't have answered his cell phone, except that he noticed the call was from me and realized that I would be calling concerning his mother. After taking my call, he immediately excused himself from the meeting, rushed home, quickly packed some clothes and called his wife Vickie on her cell phone to let her know about Sylvia's condition and that he was on his way to North Carolina.
"Robynne is coming," Suzanne said when we were both off the phone. "She is leaving right after Work. Allison is coming with her." Allison is Robynne's daughter.
Suzanne and I went back to the room Sylvia had been in on the seventh floor, picked up her personal belongings and told the nursing staff about Sylvia's near-death experience and her move to CVICU.
As we walked to the parking area to put Sylvia's things in the car, I thought about the timing of all that had happened.
I told Suzanne, "I didn't realize that Sylvia was so close to dying. If they had not done the biopsy today, the artery could have fallen apart at any time, causing her to bleed to death while she was in her hospital room and no one would have known why."
We took Suzanne's CD player and a Christian music CD (David Teems, "No Language But A Cry"), the one that Sylvia had wanted to listen to all night before the surgery, and we asked the ICU nurse to play it continuously for her. Even though she was in a drug-induced coma, we beieved Sylvia could hear and we hoped the music would give her peace. Also, I expected that evil spirits might not want to hang around and listen.
Friday, July 16, 2004
Robynne and Allison arrived at 12:30 a.m. David spent that night in Columbia, SC, intending to drive the rest of the way early in the morning, but his car wouldn't start and he had a frustrating day trying to get to Asheville.
Dr. Pritchard saw us in the hallway near the cafeteria around lunchtime and told us that the pathology report indicated that Sylvia's disease was definitely BOOP, even though neither he nor Dr. Johnson had recognized it as such during her surgery. It was more aggressive and destructive than any other case of BOOP they had seen. They began the recommended treatment of steroids that afternoon.
Bronchiolitis obliterans with organizing pneumonia (BOOP) is a condition affecting small airways (bronchioles) and air sacs (alveoli). Its cause is unknown. The name sounds strange because it was coined quite recently -- in 1985. Most people have never heard of it.
David finally arrived -- just in time for the 5 p.m. visiting schedule. Suzanne, Robynne, Allison, David and I spent the permitted fifteen minutes with Sylvia, and then had supper at a fast food restaurant on our way back to Brevard. It was nice having my family with me.
Robynne and Allison stayed at Suzanne's home. David stayed at mine. The house did not seem so empty with him there.
Saturday, July 17, 2004
This morning David said that he wanted to press the wrinkles out of his trousers. He asked if we had an iron. I told him yes, and began my search. I found the ironing board in the laundry room, but couldn't locate the iron. Out of habit, I almost turned to ask Sylvia where it was.
After breakfast, David drove us to the hospital. The girls stopped by Asheville Regional Airport to pick up Suzanne's daughter Larissa. Larissa had learned how critically ill Sylvia was and interrupted her hike on the Appalachian Trail to be with her. Someone gave Larissa a ride to an airport in Pennsylvania during the night so she would be there in plenty of time for her morning flight.
The Information Center in the Waiting Area is located adjacent to the Visitor elevators, which the staff could easily monitor. Patients could only have visitors for fifteen minutes four times a day. Only two visitors were allowed in the patient's room at any time. The staff would announce over the loudspeaker when the times began and then issue passes. Family members waiting their turn to visit a patient were asked to wait in the Waiting Area on the first floor.
Since there were six of us to see Sylvia, two at a time and fifteen minutes total, we decided to make use of every precious minute. So all six of us got on the elevator and went to the third floor where Sylvia was located. We gave the passes to Larissa and Allison so they could go see Sylvia first. The rest of us waited for our turn just inside the entrance to ICU. Within a couple of minutes Larissa returned and told us that the nurse said we could all go to Sylvia's room together.
Sylvia's nurse today was Arthur. He answered our questions, checked Sylvia's IVs, etc., and then left us to visit with Sylvia alone. The six of us gathered around her bed, held her hands, and believing she could hear (but not necessarily recognize our voices) we identified ourselves, talked to her, told her how much we loved her, and prayed for her.
While Arthur was gone, Robynne pointed at the computer monitor that displayed all of Sylvia's vitals and asked what one of the numbers represented. She accidentally touched the display, causing a menu to pop up on the screen. I suggested that she touch the screen outside the menu and maybe it would go away. It did, but another menu popped up. We decided to leave it alone. Later we told Arthur what happened. After that, he teased Robynne, reminding her not to touch anything.
When we visited Sylvia at five, Arthur told us that he had lightened up on the amount of sedative she was receiving, so she might be able to open her eyes.
"Sylvia, some special people are here to see you. Sylvia, open your eyes!" he said.
She opened her eyes part way, and tried to lift her head, but couldn't.
"Relax, Sylvia. Just relax and let them talk to you," Arthur added.
She relaxed and no longer struggled to keep her eyes open, but we knew that she knew that we were there. And we thanked Arthur for making it possible. When we finished our visit he restored the settings on the IV and Sylvia went back to sleep.
We were encouraged, and for the first time since her surgery I began to relax.
Our visit over, Suzanne invited David and me to come to her house before going home. She said they would stop on the way and rent a movie and we could have some popcorn and enjoy the evening together. That sounded good to us.
David and I decided to stop and get a hamburger on the way, not far from the hospital. After we ate, his car wouldn't start. Same trouble he had on the way up from Florida. The dealer in South Carolina was certain they had fixed the problem, but apparently they had not.
I called AAA, and they sent a tow truck to take us and his Mercury to a Ford Dealer that was less than 3 miles away. Right after I talked to AAA, I called Suzanne and Robynne, hoping to catch them while they were still nearby, to let them know we would need a ride back to Brevard. But they had both forgotten to turn their phones back on following the ICU visit, so they were already in Brevard by the time I was able to reach them. Larissa headed back to Asheville to get us.
Naturally, the dealership was closed. The tow truck operator unloaded and parked the car. David filled out the repair request form, put his keys inside the envelope, and dropped it in their lock box. It was raining now, so we stood underneath an overhang and waited for Larissa to arrive.
Little did we know that while we were having trouble with David's car, back at the hospital nurse Arthur had noticed an unexplainable change in Sylvia's condition for the worse.
It was so late by the time we got to Brevard, David and I asked Larissa to drop us off at my house. We had already missed much of the movie anyway.
Sunday, July 18, 2004
Robynne and Allison went to church in Asheville this morning. Suzanne, David, Larissa, and I went to the hospital. Before it was time for the 11 o'clock visit, the staff called us over to the Information Desk and told us that the doctor had called and wants us to come to Sylvia's room.
When we arrived, Dr. Pritchard was standing outside her door. I could tell that he was very concerned.
"It doesn't look good," he said. "She had a very bad night. She can't get any worse. The disease has such a stronghold, the steroids are not helping. Each x-ray is worse than the one a few hours earlier. I give her a couple of days at best, but I really don't think she will live through the day."
I said, "It sounds like we need to really get busy praying."
"Serious praying!" he replied. The look on his face added emphasis to his words.
Then he added, "I need for you to give me your decision regarding 'code.'"
"Code?" I asked. "What do you mean?"
"What you want us to do if her heart stops."
Less than two weeks earlier when Sylvia entered Transylvania Community Hospital in Brevard, the lady at the registration desk asked if she had a Living Will. The answer was "No." They handed me a booklet titled "North Carolina Advance Directives." I put it aside, thinking, "Sylvia and I need to talk about that after she is home from the hospital."
How quickly things can change!
"Dad, have you and Mother ever talked about this?" David asked.
I thought for a minute and then said, "I would want every effort to be made to keep me alive, but if I died I wouldn't want to be brought back. I believe Sylvia feels the same way. We both know where we will go, when Jesus says it is our time to die."
The children and I agreed. No resusitation. No shock. No code.
Karl, her nurse, wrote it down.
Suzanne, David, Larissa, and I gathered around Sylvia's bed as we had done each time before -- holding her hands, kissing her, talking to her and telling her how much we loved her and wanted her to get well, reading a few verses aloud from the Bible, and praying for her. Then we went down to the Waiting Area on the first floor to wait for Robynne and Allison.
It was about an hour before they arrived. They were smiling when they came into the room and walked toward us. Then we told them what the doctor had told us...
The smiles were gone. We took turns hugging and encouraging each other.
Since he didn't think Sylvia would live much longer, Dr. Pritchard was no longer concerned about the side effects, and he decided to give her what he called a "King Kong" dose of steroids as a last-ditch effort to make a difference. We found out later that he gave her 250mg four times that day, which according to Sylvia's body weight was 25 times the usual daily dose.
Robynne and Allison had planned to return to their home in Charleston, West Virginia, right after the 2 o'clock visit with Sylvia. After Robynne talked on the phone with her husband, Anthony, she said they decided that she and Allison should stay another day or two.
We began phoning other family members, telling them what we had learned, and asking them to pray harder, and to tell others.
Sylvia already had many praying for her, but now the seriousness of her condition was not only spread by phone to family and friends, but requests for prayers were sent and multiplied by e-mail to countless individuals, prayer groups and churches around the world -- without regard to denominational preferences!
The dream I had June 21, 1996 about Sylvia coughing and gasping for air came to mind. In the dream the problem went away and she was okay. I mentioned this to Suzanne, and added, "When He gave me the interpretation, God said that He would take care of Sylvia. I believe she is going to get well."
"Maybe the way He is going to take care of Mom is to take her to heaven," she replied.
"Maybe. But in the dream He did not take her. She was still with me after she got okay. The Lord has also told Sylvia and me that our latter days will be the best."
"Your recent years together have been your best, Dad."
"Yes, they have been better than the earlier ones, but I believe He has something much better in mind -- something that hasn't happened yet.
I believe she is going to get well."
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