Friday, July 30, 2004
When I woke up this morning, the first thought that came to my mind was: "The worse is over." How could I know that? It seemed to be a word of knowledge that came from the Lord, and I had confidence that it was true.
While Sylvia was in Med/Surg ICU, where Randy Smith was located, my family and I spent a few hours each day in the waiting room with his parents Roy and Emma, and his wife Barbara. We had much in common and became very close.
One day I met Roy's brother, John (not his real name). John impressed me as being very prideful about being a pastor, and about his Nazarene Church, which he seemed to consider the "One True Church." The two brothers were very different, and they reminded me of two of my comic strip characters. John made me think of Brother Fairasee. Roy made me think of Theophilus.
A week ago Sylvia was taken from Med/Surg ICU to the Operating Room and from there back to CVICU in the Owen Heart Center. I returned to the Med/Surg waiting room one more time, hoping to see some of the Smith family, but I was disappointed. However, our paths continued to cross in various other locations in the hospital.
One day Barbara came and sat at my table in the cafeteria.
"How is Randy?" I asked.
"Not any better. His liver has quit working now. The machines are keeping him alive."
Then she changed the subject. "Everyone in our family is really concerned about Roy. He hasn't shown any emotion. He never goes near Randy. He does go into his room during visiting times, but he stands over against the wall and never says a word. We're really concerned about him."
That night I remembered what Barbara had said about her father-in-law, and the Lord told me to ask Roy if he had given Randy his father's blessing.
I became concerned when I did not see Roy so I could ask him that question the following day. I wondered if Randy were still alive.
Then the next morning as I came out of the cafeteria after eating breakfast, I turned a corner and came face to face with Roy.
"Hi Roy! How's Randy?"
"Gone? You mean he died?"
"No, but there's no hope. The doctors think it is time to disconnect the machines, but the girls are not ready to do that."
"Roy, have you given Randy his father's blessing?"
Roy looked down and to one side for a moment. And then he looked back at me.
"What do you mean by that?" he asked.
"I mean have you told him that you're proud of him, that you love him, that you're glad he is your son. Something like that."
Roy looked away for a moment and didn't say anything.
We changed the subject and talked about something else for a few moments and then went our separate ways.
That afternoon I returned to the cafeteria for a snack.
"Bob!" Someone was calling my name. I turned and my eyes searched for someone I knew.
"Bob!!!" Finally I spotted Roy. He was sitting at a table with Emma and some other family members and smiling like I had never seen him before. He motioned for me to join them.
I walked over and sat in the chair next to his.
"We had that conversation!" he said with a big smile, beaming from ear to ear, and reaching out to shake my hand. "I'll be forever indebted to you!"
I should have told him that his debt was to the Lord, not to me, because I was just the messenger. I realized that's what I should have done when I thought about it later, but at this moment I just stared in awe at the change that had taken place in Roy.
"That's great, Roy! Randy may be asleep, but I believe he heard what you said. If not, Jesus will let him know. But this might have been more for you than for Randy."
I didn't see Roy or Emma again. But the next day I did see Barbara.
She said, "Our family can't get over the change in Roy. Yesterday he came into Randy's room, pulled a chair over to Randy's bedside, sat in it, held Randy's hands, talked to him, and cried... He's a different person now!"
This brought tears to my eyes, too. Tears of joy! Such a blessing for me, as well as for the Smith family!
I missed seeing the Smith family after that. A few days later I saw a hospital volunteer in the cafeteria that helped families of patients in Med/Surg ICU. I asked her if she knew how Randy Smith was. She said that she had read in the Sunday newspaper that he had died.
I had never met Randy, and I was not surprised by the news of his death. But it made me sad. My heart went out to Randy's family. I was glad that Randy had received his father's blessing. I received one as well.
Sylvia's nurses told me to feel free to call them anytime, except during the seven o'clock shift changes, when the nurses going off duty were busy sharing information with the nurses coming on duty. Once in a while I would wake up during the night, needing to know if Sylvia was okay. So I would make that call.
After what we had been through, a "She is stable" or "No change" report was reason to rejoice. Although she was not better, she also was not worse and to me that was progress! "Whoopee!!!"
Some days I walked the mile from the Rathbun Center to the hospital. Other days, especially if the weather was bad, I used the shuttle. Suzanne usually gave me a ride back to Rathbun on her way home at night.
I ate all my meals in the hospital cafeteria. The food was good. There was a lot of variety. And the prices were reasonable. I got to know some of the cashiers. Sometimes they would ask how Sylvia was doing.
One of my special memories is the day that nurse Linda asked, "Mr. West, are you aware that you now have extended visiting privileges?"
"No. What does that mean?"
"You can be with Mrs. West anytime during the day and for as long as you want to. Just call her nurse to be sure it is okay before you come up. And there will be times when you'll be asked to step outside for a few minutes."
So, when the scheduled 15-minute visiting time was over, I stayed.
At noon when I stood up to make my trip to the cafeteria for lunch, Linda surprised me by asking if I would you like a hospital tray.
Moments later, there it was -- a complete meal -- meat, vegetables, bread, dessert, and a drink on a table in front of a comfortable chair that seemed to be calling my name. Thank you again, Linda!
On another day when Linda was Sylvia's nurse, I arrived around 10 a.m. Linda asked, "Where were you? I had breakfast ready for you this morning."
I think she was joking.
Later as Linda was changing the food bag attached to Sylvia's feeding tube, I noticed two other nurses standing nearby. I said, "Sylvia gets her food from the pharmacy. I get mine from the cafeteria. Which one of us is eating better?"
We all laughed.
But Sylvia would not have thought it was funny. She wasn't eating at all.
Even though I now have a room at the Rathbun Center, I have decided to go home one night a week to wash my clothes, to pay bills, to do some weekly "housekeeping" on my web site, and to send updates on Sylvia's condition to my e-mail list, etc. I continue to receive encouraging e-mails. Most are from people I have never met face to face. For example, here is an excerpt of one from a long-time fan of my Theophilus comic strip:
"I have been in a fast two and a half days, and prayed for you and Sylvia. I have been strongly impressed in my spirit how YHWH is grieved over the suffering of His creation. He did not create us to suffer (or die), but then sin entered in by Adam...
"It is also very strongly impressed upon my spirit that Sylvia is a child of the Most High, and her salvation is sure. Her name is in the Book of Life. That's the most important thing.
"I know that God heals. It is also true that He has prepared a place for us. May God grant Sylvia the victory, and a great testimony of healing.
"Let us not forget first and foremost this life is not all there is! Let us remember, we are not as those whose hope is cut off, but we have an enduring home, where no one ever is sick, no one ever ages, no one ever is hungry, or suffers any difficulty at all.
"Just thinking about these things makes me want to shout and rejoice.
"My prayers are with you. Please remember the Lord, and the place He has prepared for her. If it is her time, be assured He will gather her with his love, and she will be in a place of splendor we can't even imagine..."
Monday, August 2, 2004
Sylvia is stable. She can't really progress much until the hole(s) in her right lung heal. She is currently leaking half the air she is taking in. The steroids, which are necessary to treat the BOOP, inhibit healing. So Dr. Pritchard is slowly reducing the amount of steroids she is receiving while trying to be careful to not reduce it so much that the BOOP rejuvenates -- a tricky balancing act.
Wednesday, August 4, 2004
The surgeon told me that today's x-ray was encouraging. Sylvia still has an air leak in her right lung, but it doesn't seem to be quite as large as it was a few days ago.
Several days have passed with no crisis or emergency.
They reduced the oxygen coming through the ventilator to 40%, which is the lowest it has been so far.
They took Sylvia off the IV drug that was paralyzing her. This was a drug that they started using about a week ago, because they wanted her lungs to rest and let the machine breathe for her. Her lungs would be more likely to heal, since they wouldn't be working as hard. They are now allowing Sylvia to supply about half of the total breaths, with the ventilator supplying the other half.
They also took the "A-line" out of the artery in her arm, because they don't think it is necessary now.
Larissa returned to Pennsylvania to resume her hike on the Appalachian Trail.
The doctors are still baffled regarding how Sylvia got BOOP. It's not an infectious or contagious disease, but rather an inflamatory disease, and it can be triggered by something as simple as arthritis or a rheumatoid condition. The pulmonary specialists told us that they have never seen a case that was as aggressive and destructive as Sylvia's BOOP. This is a new experience for them, and even though they are doing their best to help her, the treatment does involve some "trial and error."
Thursday, August 5, 2004
The doctor is ready for Sylvia to wake up, so all of the other IV drugs have been discontinued. She was on no medications prior to developing BOOP and she has been saturated with morphine, sedatives, and various other IV drugs for the past three weeks. Nearly a week will pass before she will be able to open her eyes even a little bit.
Saturday, August 7, 2004
Robynne and her son Aaron drove from Charleston, West Virginia, yesterday to be with us for the weekend.
Today Suzanne, her husband Fred, their two sons Fred and Josiah, Robynne, Aaron, and I gathered around Sylvia's bed and sang hymns to her for 15 to 20 minutes. Suzanne and Robynne chose cheerful songs ("To God Be the Glory," "Because He Lives," "The Great Physician," "I'm Happy Today," etc.). We really enjoyed ourselves. Sylvia definitely knew we were there, because her eyes began moving quickly under her eyelids and her mouth was moving. It was obvious that she was trying to wake up, but she just couldn't.
According to the e-mails we are receiving, it seems that there are people all around the world praying for Sylvia.
Although God had not given Sylvia a "take up your bed and walk" miracle, some of us believe He has given her a series of miracles. It is encouraging when others, especially medical professionals, attribute Sylvia's survival to divine intervention. For example: "Dear Bob, it is nothing short of a miracle that Sylvia is still alive. I am a nurse and am reading the e-mails and being amazed... Do remember that Sylvia can probably still hear your voice. So feel free to talk to her and sing to her and tell her whatever you want her to know. Tell her the things you love and appreciate about her. You can tell her to hang on or if you feel she's too tired to fight anymore, you can tell her it's okay to let go. She is listening."
Tuesday, August 10, 2004
This morning the surgeon and pulmonary specialist removed the breathing tube that had been down Sylvia's throat since July 15, and put a temporary trach tube in its place. She isn't ready to come off the ventilator yet, but she has made lots of progress. Sylvia is initiating all of her own breaths, but the ventilator is supplementing the volume of air until she gets strong enough to breathe more deeply on her own. The air leak from her right lung is still there, but it seems to be slowly healing.
Suzanne remembers, "The trach procedure was done around 8:30 a.m. and when Dad came into the room around 10:00 a.m., the nurse said, 'Sylvia, Bob's here,' and to Dad's delight, Mom opened her eyes part way. When I was with her that night, she did the same thing, but it was obvious that she was still in a fog and that opening her eyes took a lot of energy."
Thursday, August 12, 2004
Suzanne wrote in an e-mail update: "Last night I was with Mom for three hours, and she had her eyes completely open and fixed on me the entire time as I talked to her, read her cards to her, etc. She can't talk yet, but she nodded 'yes' and 'no' to questions and smiled at appropriate times, so I knew that she was tuned into what I was telling her. I could see that she was very tired, so I told her to just close her eyes and take a nap anytime she felt like it and I wouldn't be insulted, but she wouldn't do it. Every time her eyes closed, she quickly opened them back up.
"One of the things that I told Mom was that she had singlehandedly improved the prayer lives of a lot of people, including her entire family, and that we were all so grateful to God for all He had done and was continuing to do for her and for us."
As Sylvia began to be more aware of her pain and the fact that she was trapped in a body that she could not move, she looked puzzled.
Suzanne asked, "Mom, do you wonder why we're so happy about how well you're doing, while you feel so much worse than you did before you had surgery?"
Sylvia nodded, "Yes."
"Well, Mom -- you got a lot sicker before you started getting better. You've been asleep for a long time."
"What time do they stop serving hot meals in the cafeteria?" I asked one of the nurses, not realizing how this conversation was affecting Sylvia.
"It's after seven now. Suzanne, let's go eat supper while we can still get a hot meal. Honey, we're going to the cafeteria. We'll be back in a little while."
Sylvia got this panic-stricken look on her face and strongly nodded, "No."
"You don't want us to go eat?" I asked.
It took a few minutes of us asking questions before we understood that it was okay with her for us to do that, but that there was something she urgently needed to let us know before we left.
She even tried to mouth the words, but neither of us could read her lips. It was frustrating for all of us.
Finally, we asked, "Are you hurting?"
She nodded, "Yes."
We began at the top of her head and moved downward naming parts of her body. Each time she nodded, "No."
Until we mentioned "Stomach."
She nodded "Yes."
I lifted the sheet and her gown to see if I could see the source of her pain, maybe something poking her. Nothing unusual.
I turned aside and said, "Lord, I need you to let me know what Sylvia is trying to tell us. I have no idea."
Suddenly it seemed very clear, and it made me sad.
"Honey, are you hungry?" I asked.
With tearful eyes, she nodded, "YES!"
She didn't mind us going to the cafeteria, but she wanted us to bring her some food when we returned.
Suzanne and I explained why she couldn't have anything to eat. We told her that she was getting her nourishment through the feeding tube in her nose that goes down her throat and empties into her small intestine, bypassing her stomach so that none of it accidentally gets into the lungs. There was nothing we could do for her hunger pains. It was heart-breaking.
Now it was past 7:30 and the hot line was closed. We went to the cafeteria anyway. We could still get something to eat, maybe soup and salad or a hot dog. But now I wasn't very hungry.
Friday, August 13, 2004
When I told nurse Karl my sad story about Sylvia letting us know that she was hungry, he said, "That's good!"
"That's good?" I asked. "What's good about it?!"
"She has hunger pains. That tells us that part of her body has awakened inside and there is natural communication between it and her brain. That's progress!"
They have started putting Sylvia in what they call a Neuro-Chair for three hours, three times a day.
After being in bed for five weeks and in a drug-induced coma almost that long, Sylvia is literally skin and bones with no muscle mass. Her body is still waking up from the saturation of drugs. She is unable to move any part of her body, except her eyes and a slight movement of her head to nod "yes" and "no." Being helpless and sitting much higher in the air than in a normal chair with only a lap belt to keep her from falling, but nothing to keep her from leaning, must be a horrible experience. For nine hours a day!
It must seem like torture to Sylvia.
I expressed my concerns to the charge nurse, but she and others assured me that this would help Sylvia recover. Tough love, they called it.
When Sylvia was in the neuro-chair, I stood beside her. I noticed that she had a tendency to slant to her left side in spite of the pillows used to prop her in a vertical position. So I stood on her left side to give her more support. Usually, I had to squeeze between the chair and the bed, which caused me to be a little off-balance. It hurt my legs and quickly became wearisome.
Sylvia was able to let me know that she wanted me to massage her neck and shoulders. After a half hour or an hour of doing that, I would ask her if she wanted me to stop, hoping she would nod "yes." But usually, she would nod "no." And reluctantly I would continue.
I wonder whether she really wanted her shoulders rubbed for such a long period of time or if she really wanted to make sure I was there to keep her from falling. Sometimes she would fall asleep with her head leaning against my chest. So I continued standing there long after I stopped rubbing her shoulders.
But I couldn't always be there. I know there were times when the night nurse had her sitting in that chair for three hours after I left at 9 p.m., because she had only been in the chair for six hours during the day shift.
I am writing this a year later (August 2005). Sylvia has been home since last October. Two days ago I mentioned to Sylvia what I was writing about and I asked her if she remembered any of this. Her strong reaction told me that she did.
The word "neuro-chair" triggered memories that terrified her and caused uncontrollable sobbing. She could see herself hanging from the ceiling, knowing that she would fall to the floor and no one would know except her.
That night she went to bed crying and the next morning she woke up crying -- still having that awful feeling of being totally out of control, still hanging up in the air. Then she left and ran some errands and went to the gym to work out. By the time she was back home she was okay.
Today when she read what I had written, the same images came to mind, but the emotions didn't. However, she is still mad at me. She feels that I failed to protect her.
Now back to Friday, August 13, 2004...
Dr. Pritchard told me that he has arranged for Sylvia to move from Mission Hospital's CVICU to the ICU of Asheville Specialty Hospital (also known as L-TACH, Long-Term Acute Care Hospital) on the fourth floor of St. Joseph Hospital across the street and a couple of blocks away.
"I will still be the attending physician," he added. "She will continue to have intensive nursing care there, but she will also receive physical therapy, speech therapy, occupational therapy, etc., by professionals in those fields."
Sylvia's case manager arranged for me to visit L-TACH, and meet the case manager and some of the nurses there. I was impressed and excited about what seemed to be another milestone on Sylvia's road to recovery.
But it frightened Sylvia.
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