In July 2004 a rare, aggressive, deadly lung disease called BOOP almost took Sylvia's life (several times). After three and a half months in the hospital, most of which was in ICU, she made an amazing recovery. Since she came home on October 16, 2004, she has been very busy. And I stayed busy too, trying to keep her safe.
But she also took care of me. Like the time she took me to the hospital emergency room. I will let Sylvia tell you about that. Here's a quote from her email to our family on March 3, 2005: "I took Bob to the Emergency Room two Mondays ago. We were there for six hours.
"They took x-rays and blood, did an EKG and a CAT scan and gave him a shot of Demerol for pain. Larissa had told him that the shooting pain in his left shoulder could be heart-related, so we had it checked out.
"The ER physician said that Bob was in disgustingly good health for a 72 year old man; also that he had never seen a normal CAT scan before, but that Bob's was normal.
"While we were there, I read several chapters of "The Purpose-Driven Life" to Bob. (And to everyone else in the ER as well). Then we went to the drug store for two prescriptions for Bob, one for pain and one to relax and sleep. By then Bob was feeling better and we ate at Wendy's and then went to our computer class.
"On Thursday when I took Bob to Dr. Buehler's office in Sapphire, they decided that I needed to come in for a checkup next week. This hardly seems fair, as I feel perfectly fine. Except that I do hurt some from using those machines at the Fitness Factory, but hey, I'm 70 years old. And I never try to use the machines that those young people use, which I consider as torture machines. The ones I do use are bad enough. There is one machine on which I sit and pedal and it tells me to pedal faster. I just smile and get off and do something easier. If Dr. Buehler does not find anything wrong with me, I will call and cancel the lung doctor appointment for April and wait until I need to go to the doctor.
"I met several ladies in the doctor's waiting room and we talked about God working in our lives. It was really neat...
"So while Bob was bored and in pain and pacing the floor and waiting in the little room where you get weighed for an examining room to open up for him, I was enjoying myself, visiting with the colorful people in the waiting room. So I had a neat day. And after we got back to town and filled Bob's new prescription for muscle relaxant, he took me out to eat. So that made it an even better day..."
April 7, 2005
Our daughter Suzanne made this comment about Sylvia and me in a letter to someone: "Mom went with me to my 12-step meeting in Asheville last night, and she seemed to enjoy it. I told her that she was welcome to go with me each week if she wanted to and she may decide to do that. Mom seems a little less hyper than she was, and that's helping Dad be less stressed, although Mom still keeps him on his toes (especially in the financial area)."
Our 2005 Beach Trip, June 4-11, 2005
I will let Suzanne and Sylvia tell about our trip back to the Isle of Palms. In a letter to someone Suzanne wrote: "I took my parents to the beach June 4-11. I had promised my mom when she was in the hospital last year that when she got well, we would go to the beach. She loves the beach and used to go frequently when she was a teenager in West Palm Beach. However, she's only been able to go a couple of times in the past 50+ years. As soon as Mom was well enough to use the computer, she did some research on the internet and reserved a small condo on Isle of Palms, South Carolina (near Charleston) for that week.
"Mom had a great time because she had lots of energy and the desire to explore, and I took her to Charleston every day to sightsee and learn about the rich history in that area. We spent a lot of time in their big museum (Mom wanted to look at and read everything), took a boat ride out to Fort Sumter and explored there, as well as at Fort Moultrie. We also toured a pre-Revolutionary house that had been restored to the way it had been during the Civil War, and we walked A LOT all over town, looking at as much as possible. We also got to eat at a couple of seafood restaurants, which was a real treat. And between 6:00-8:00 each evening, we walked along the beach, kicking our feet through the water and enjoying the relaxing sound of the waves (my favorite part of the trip).
"My dad had a great time because he was able to stay at the condo by himself while Mom and I were in Charleston each day, and he could enjoy the peace and quiet, read his book and watch re-runs of "The Waltons" and "Little House on the Prairie" on TV. He doesn't have cable TV at home, but they had 99 channels at the condo, so he enjoyed getting to watch favorite old shows and movies that he hasn't been able to see in many years.
"Two of my aunts and uncles (Janie & Rip and Gaylon & Mary Lou) came up from Florida that week and stayed in the same condo complex, so we got to spend time with them also. Anyway, it was a very nice vacation."
The following is an excerpt from Sylvia's email to our granddaughter Larissa and others in our family: "Sorry you couldn't join us, but we had the best week on the beach at the Isle of Palms. Rain was forecast all week that week, but we had only a couple of short-lived storms until we started for home. Then your mom did have to drive through some heavy rain, but only part of the way...
"It was my 'best' vacation ever. I love the beach and I love Charleston and I love doing stuff with family. I think it was Bob's best too, as he did what he wanted, which was nothing. And he seldom gets to do that. And Suzanne did all the driving."
Sylvia's Encouragement to Grandson's Fiancee, July 20, 2005
"God is blessing you and Fred with your current new job and that you were able to obtain it so quickly. I really admire the fact that you were willing to 'fight' to have the time for your honeymoon. When I was your age, I would not have had the nerve to do that. This shows that you are much more secure in who you are (and Whose you are), than I was. It has taken me many additional years to recognize it in my own life. You are so very fortunate to have learned these things at such an early age. It will make your marriage much more happy and provide a much more secure foundation for you and Fred.
"And your influence on Fred has helped him in so many ways. It is such a pleasure for a grandmother to observe. You are a worthy woman Kristie. If you should ever have any doubts about it, just ask me and I will reassure you.
"Have a pretty day. Hi and love to your parents and to 'your' Fred.
October 22, 2005
Sylvia was very sick when the above photo was taken at Fred and Kristie's wedding on October 22, 2005. Suzanne tells what happened before and after this in the following excerpt from her letter to Kristie's parents on December 8, 2005: "You may have heard from Fred about my mom's illness and how she has required quite a bit of my time and attention since she got back from Florida.
"I can't remember if I told you that she had swelling and pain in her feet and lower legs for about a week before she and my dad flew to Florida on October 17. Nevertheless, she spent two days (walking) at Walt Disney World with my dad's sister, Janie, as she'd been planning all year, and she spent another day touring MOSI Museum with her sister, Trudy, and my dad the day before the wedding. Early the next morning she got severe diarrhea to add to the horrible pain in her feet and ankles, and, as you know, even though she was at the wedding, she was very sick and crawled into Kristie's bed immediately after the ceremony.
"She stayed in Florida for another week and a half, as planned, but instead of being able to visit with all the relatives, she stayed in bed most of the time, first at my brother David's house in Dade City and then at her sister Madeline's house in Ormond Beach. She ate very little and lost 10-15 pounds (which wasn't excess weight) before getting back home on November 3.
"When she didn't improve at all after being home several days, I did my best to convince her to go to the doctor, but she stubbornly refused (and told me not to come to her house anymore because I was being negative by discussing the need to go to a doctor). It sure is hard to know when to let your mother make foolish, irrational decisions and suffer the consequences (death) and when to step in and force her to get help!
"Thankfully, God helped me out by providing a kind, dear man (who was mom's doctor before he retired a few years ago) to go up to her house with me on Saturday, November 12, and he convinced her to let us take her to the hospital. The lab tests determined that she had a horrible kidney infection that had gotten into her blood and poisoned her blood (septicemia) -- and consequently, she was about a day away from death. In addition, she had polymyalgia (an inflammatory condition) which caused the BOOP to return. So they gave her two IV antibiotics for the infection and steroids for the inflammatory condition and BOOP, plus pain medicine.
"She improved enough during the next week that she was able to be moved from the hospital to a nursing home on November 18 in order to get some physical therapy and become strong enough to return home. She had lost all of her muscle mass and was unable to walk unassisted at that point.
"She had a set-back a couple of days before Thanksgiving when she got a stomach virus and once again became too weak to get out of bed, but since then she has been able to receive physical therapy and was able to come home this past Monday."
I thank God for Suzanne! She has let God has use her so many times to help Sylvia and me both, as well as others.
Again Sylvia began to improve, but she never completely recovered. The prolonged use of steroids had changed her body. She now had extreme osteoporosis and is three inches shorter than she was two years ago.
Gaither Family Fest 2006
Sylvia began getting weaker and required more pain medication. She found it more and more difficult to eat and drink.
Early in May the Emergency Room doctor at our local hospital diagnosed Sylvia with pneumonia, prescribed antibiotics and sent her home. A few days later our family doctor arranged for her to be admitted to Mission Hospital in Asheville, where it was determined that she had compression fractures that made it too painful for her to breathe deeply enough to get sufficient oxygen, so she was sent home on two liters of oxygen.
On Memorial Day weekend our daughter, Suzanne, took Sylvia to the Gaither Family Fest in Gatlinburg, TN. We had purchased tickets months earlier at a time when Sylvia was feeling better, and Sylvia was determined to use them even though I didn't have the strength to make the trip, much less care for her away from home. Dealing with all of the oxygen containers and moving her in and out of the wheelchair were challenging enough in familiar surroundings.
Suzanne was glad that she was able to take her mother to the Gaither Homecoming concerts that weekend because they did nourish her soul and bring her much joy, but she told me it was one of the most difficult tasks she had ever undertaken because Sylvia was unable to do anything for herself and had constant severe pain. The pain medication adversely affected her alertness and rational thinking but didn't relieve the pain enough for Sylvia to sleep at night, which meant that Suzanne didn't have the opportunity to sleep either. Between 3 a.m. and 4 a.m. on Monday morning Sylvia was in such excruciating pain that she told Suzanne to call me and ask me to pray for her. Suzanne objected because she was trying to give me an opportunity to get uninterrupted rest while they were away, but Sylvia kept insisting so she made the call. I was grateful to learn later that God answered that prayer and gave Sylvia some much needed sleep. By the time they got home on Monday afternoon Suzanne was extremely exhausted and told me that she had caught a glimpse of what I was dealing with day after day as I did my best to care for Sylvia.
Two days later (May 31) a surgeon performed the vertebroplasty outpatient procedure on three compression fractures in Sylvia's spine, but the next day she required another Emergency Room visit. When she was taken to the ER again three days later (June 4), her heart rate was at 164 and her kidneys were on the verge of shutting down. This time they admitted her to our local hospital, and three days later she was transferred back to Mission Hospital where she stayed for a month while a dozen specialists and their associates ran all kinds of tests, trying to determine the source of her health issues.
During that time it was discovered that she had an infected gall bladder, so a radiologist inserted a drainage tube, since she was not strong enough to live through the surgery to have it removed.
The good news is that during her hospital stay her spinal pain subsided enough for her breathing to return to normal and she no longer needed to be on oxygen. And apparently her gall bladder infection has healed. The drainage tube was removed July 31.
The bad news is that she has been diagnosed as having Wegener's Granulomatosis (vasculitis), which attacks important body organs, but especially the lungs and kidneys. This could explain her bout with BOOP in 2004, her urinary tract infection and septicemia last Fall, as well as what was happening when she went into the hospital this time. Her immune system is attacking her body, much like what happens when someone receives an organ transplant, so they're suppressing that, which makes her vulnerable to more infection. She is receiving Cylclophosphamide (cytoxan) and a high dosage of Prednisone daily. Plus a daily shot of Forteo for her bones. Also other medication. And there are side effects to some of these drugs that must be dealt with. Since July 6 she has been in rehab at a skilled nursing facility near our home.
Recently her feet and legs have swollen, especially her left one, which is between two and three times normal size. An ultrasound revealed that there is a blood clot. Sylvia was making good progress with therapy. Now all therapy has been suspended, bed rest prescribed and a blood thinner was added to her drug mix.
After placing everything else on hold for the past two years to take care of Sylvia, I have become completely exhausted and have been struggling with depression. Our doctor gave me some medication, but that made me feel so much worse that I quit taking it. Sylvia is getting good care. She has a very positive attitude (which is inspiring and encouraging to me), and it is obvious that the Lord is using her to minister to others in the health center and using them to minister to her. And I am beginning to get some rest.
October 13, 2006
Sylvia came home from the nursing home today. A Home Care nurse helped us make the transition, teaching us how to give the shots and other medication. She continued to come once a week and as needed. An aide came regularly to help Sylvia with a bath and other chores, and stayed with Sylvia while I went to the drug store, grocery store, etc.
Sylvia continued to improve, gain strength, and was able to walk around inside our home on the main level without using a walker or cane. She even prepared meals, but would quickly become exhausted.
On November 5th while sitting still in our living room, she suddenly cried out in pain from an invisible blow to her back. Another compression fracture! A day or two later she also started complaining of pain in her abdomen. Sylvia's 3-day pain patch was no longer enough. She quickly needed maximum dosages of pain pills. She could no longer lie down in bed and had to get what little sleep she could while sitting up surrounded by pillows in a living room chair.
During her appointment with the rheumatologist on November 15th, he said that it appeared that Wegener's Granulomatosis was in remission. He told me to stop giving her the Cytoxin pills and begin giving her Methotrexate. He also said to reduce Prednisone from 30 Mg daily to 20 Mg, and then to 15 Mg and 10 Mg over the following weeks. She had another urinary tract infection. He gave us an antibiotic for that. He also arranged to get an MRI of her spine, and prescribed a sedative for her claustrophobia to be given just before the MRI along with her pain medication.
On November 20th a very patient and skilled technician helped Sylvia through the trauma of going from a sitting position to laying down for the first time in two weeks, laying inside the closed MRI for an hour, and then returning to her wheelchair. The MRI showed that Sylvia did indeed have another compression fracture.
On November 24th I was told by the doctor to stop giving Sylvia Coumadin. They wanted her off the blood thinner for at least 5 days before the Vertibroplasty procedure, which was done on November 30th.
Sylvia continued to be in a lot of pain after the procedure, in spite of being on a maximum dosage of pain pills. It was difficult to tell for sure, but most of the pain seemed to be coming from her abdomen. She was also often nauseated and took pills for that. It became more and more difficult to get her to drink or eat, and it took longer and longer for her to take her daily medication.
December 10, 2006
Sylvia was so dehydrated and weak that I took her to the Emergency Room. They hydrated her and sent her home.
She seemed to do better for a few days. She really tried to eat and drink, but each time severe pain began in her abdomen and she could not. She got weaker and weaker. She needed help to get up and down, and she went from walking without a walker to needing help to walk and finally needing the wheel chair.
Saturday, December 23, 2006
Late this afternoon, December 23rd, I fixed Sylvia and me a turkey dinner, something I knew she would like. I watched as she labored unsuccessfully to cut a piece of tender meat. I asked if she wanted me to cut it up for her. She nodded yes and released the knife. I cut everything into bite size pieces. One bite was all she managed to eat. She was so exhausted and weak that she dropped her head and appeared to be sleeping.
Within a few minutes our daughter Suzanne happened by. We decided that Sylvia needed to be in the hospital but she was too weak for us to take her. This time I called 911.
A few hours later after x-rays and tests, the ER doctor said that they could continue to hydrate her, but that her condition was too complex for our local hospital. So he arranged for her to go to Mission Hospital in Asheville where she would have access to the doctors that have been treating her. Tests at Mission revealed that Sylvia had another gall bladder infection, and like the previous time in June she was too weak for surgery. Again a radiologist inserted a drainage tube.
In addition to being very dehydrated, her potassium level was dangerously low and she received 7 IV bags for that along with other IVs. The doctor stopped the Methotrexate while they worked to cure the infections. He said that the Prednisone needed to stay at 10 Mg.
Thursday, January 4, 2007
Today Sylvia was transfered from Mission Hospital to Thoms Rehabilitation Hospital.
Saturday, January 13, 2007
Sylvia came home from Thoms Rehabilitation Hospital today. Unfortunately, she had suffered another compression fracture (her fifth) the day before. She wasn't really well enough to come home. Over the weekend she was in a lot of pain, she ate and drank very little, and got weaker and weaker. During Monday night she fell. I was helping her, but when she started falling I was off balance and in my weakened condition I fell too! I was able to get up, but Sylvia couldn't and she was hurting so much that I couldn't help her. I called for an ambulance and they took took her to the Emergency Room. She was x-rayed, found to have a very painful bruised sternum, but no broken bones, and sent home.
Our Hospital Home Care nurses had been telling me that Sylvia was now too sick for me to take care of her at home. This incident got my attention! I knew they were right. My heart was breaking and tears were running down my face as as I told Sylvia that I could no longer keep her safe at home. She said, "I understand."
That morning, January 16, 2007, I called our doctor and let him know about Sylvia's dehydrated and debilitated condition. She was admitted to the local hospital that morning.
After 6 days of IVs, bone scans, heart tests, etc., she was transfered from the hospital by ambulance to a skilled nursing facility on January 22nd. She continued to be too weak for gall bladder surgery. On Friday, February 9th, the drainage tube was accidentally pulled out of her gall bladder. EMS took her to Mission Hospital so an intervention radiologist could re-insert it. But the doctor examined her and decided to leave it out.
Sylvia is very weak and in a lot of pain, even with a high dosage of pain medication (which causes other problems). She also continues on toxic medication to counteract the effects of the Wegener's disease and auto-immune disorder and on blood thinner to help prevent blood clotting that might result from her rapid and irregular heart rate, and on other drugs. She is also on 3 liters of oxygen.
Thursday, February 8, 2007
We signed on with Hospice today. They are helping with pain management and in other ways.
Even in her weakened, painful, and drugged condition, Sylvia continued to encourage all whom she comes into contact with. God was still using her to minister to others.
I met Sylvia in April 1953. That was almost 54 years ago. We were married December 1, 1953. I thank God for all those years together. But the time we had left was the most precious...
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