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Sylvia West Updates
moved here from Theophilus and Our Father's Children What's New! pages
July 4, 2004
- An explanation and a prayer request:
My work on Our Father's Children has been interrupted while I take care of Sylvia. She has been VERY sick for over a month. I also have a health problem now. Please pray for us. Thank you!
~ Bob West
July 20, 2004
- Update on Sylvia:
Beginning June 5th Sylvia became very sick. During the following weeks she struggled at home trying to heal what seemed to be pneumonia. Finally in a weakened and oxygen-deprived condition she agreed to see a doctor on July 6th. He immediately put her on oxygen and sent her by ambulance to Transylvania Community Hospital, our local hospital. With x-rays, cat scans, blood workups and other tests, the doctors continued to think she had pneumonia. But after almost a week of antibiotics, her white blood count continued to rise, and even on oxygen she continued to find it more and more difficult to breathe. She became sicker and weaker.
On July 12th she was transfered to Mission Hospital in Asheville. Even then the lung doctor thought it was just a severe case of pneumonia. On July 13th he went inside her lungs with a fibre-optic camera, looked around and took sample tissues. On July 14th the lab results said no infectious disease was found. Definitely not pneumonia.
On July 15th they performed a routine biopsy operation to get larger tissue samples to determine what was attacking her body. As soon as the surgeon made a small incision between the ribs on her right side, blood spewed out, and blood came up into her breathing tube. This surprised the surgeon, so he made a larger incision and blood really came out. They quickly opened her chest to determine the cause and found that the lower lobe of her right lung had completely rotted and just fell apart. Only by the grace of God and the skilled surgical team and the excellent staff and resources they were able to immediately put to work is she still alive. They almost lost her ten different times.
The next day the lab results showed conclusively that she had a rare, aggressive and deadly form of pneumonia called "Bronchiolitis Obliterans, with Organizing Pneumonia (BOOP)." They are treating her with steroids.
Since the operation she has been in the Cardiovascular Intensive Care Unit on a ventilator, feeding tube, and several IVs. She is in a drug-induced coma and will remain asleep until the breathing tub can be removed. She has excellent doctors, nurses, and technical support, but she remains in critical condition.
On July 18th the doctor called me and my children aside and told us that she had gotten worse during the night and and it didn't look good. The disease was continuing to destroy her lungs in spite of the treatment. He believed that she would live only a few days at most. We began to pray even harder.
On the morning of July 19th the doctor looked at the x-rays and other data and was surprised that her lungs didn't look worse. They looked better. He was surprised, but not enough to be hopeful. We continue to pray along with perhaps thousands of others that God will give her the miracle she needs to be restored to health.
Thank you so very, very much for your love, concern, e-mails, cards, and prayers. I am spending almost all of my time awake at the hospital, so I have not had time to respond. But I do read your messages and will respond when there is time. Please continue to pray for Sylvia's healing.
I miss her so much. I am incomplete without her.
~ Bob West
September 5, 2004
- Update on Sylvia:
Prior to June 5th when her sickness began, Sylvia was very healthy and even worked out at a fitness center three or four times a week. She has been in hospitals since July 6th and in intensive care since July 15th. Much has happened during that time which I won't go into now, but when the time comes we will put Sylvia's testimony, the whole story, on our web site.
On August 23rd her doctor said, "It is going to take several weeks, but she is going to get well." He said that on July 18th he thought she would die before the day was over, and that it is a miracle that she is still alive. He has also said that God must have a special plan for Sylvia. I agree.
In addition to intensive care, she is now receiving physical therapy, occupational therapy, speech therapy, etc. She is awake now, but very weak and without muscle mass after being in bed for over two months. She can only move a few parts of her body, and only slightly. As she grows stronger, she will have to learn to speak, eat, sit up, stand, walk, etc. They are weaning her off the ventilator. She still has a feeding tube, and a chest tube to give the air leak from her lung some place to go. The doctor expects the air leak to heal up completely after she is off the ventilator for a while.
Thanks so very, very much for your prayers and expressions of love and concern. Please continue to pray for Sylvia.
~ Bob West
September 22, 2004
- Update on Sylvia -- Goodbye ICU !
The medical staff is excited over Sylvia's amazing progress during the past few days. I am too!!!
Sylvia got sick on June 5th and went into the hospital on July 6th. She almost died on July 15th, and has been in intensive care ever since. That is, until Monday, September 20th at 7 PM, when she was moved out of ICU into a private room. Yaaaaa!!!!!
She has been completely off the ventilator for several days. Her trach tube was replaced by a metal trach which could be plugged to allow her to talk. Late last week they removed the chest drainage tube since the air leak from her right lung had apparently healed. Over the weekend they lifted the contact isolation that was imposed for a couple of weeks while she had a couple of contagious infections. Monday morning she was taken down to radiology for swallowing tests. Then the doctor ordered her feeding tube removed. And she was moved out of the "fishbowl" to a private room. Yesterday the doctor removed her trach collar. The only thing she is hooked up to now is oxygen, and they are gradually reducing that so she should be off that before long.
She is still very weak, but gaining strength at a fast rate now. She is alert, thinks very clearly, and is aggressively participating in her therapy in order to go home as soon as possible. She needs help getting to a sitting position, but can balance herself once there. She cannot stand or walk yet. That will require the most work and it will be painful for her because she now has very tight heel cords ("foot drop").
Suzanne and I have been bringing her up to date on all that has happened while she was "sleeping." I told her a few days ago that she was "fortunate" to be in the hospital where there was electricity and water, since we lost ours at home for a few days as a result of Hurricane Ivan that came through western North Carolina.
A sign that Sylvia is well on her way to recovery is that she asked me to bring some of her clothes to the hospital. Also, she told me to go home and clean the bathrooms. And she told me to go to the store and buy a get-well card and send it to my mother who is very sick. It is good to hear Sylvia's voice. I have been with Sylvia every day that she has been in the hospital (except the day Ivan came through and I couldn't get there because of the flooding and trees across the roads), but most of that time she was sedated and asleep or in such pain she didn't open her eyes, or we couldn't communicate because she couldn't make a sound and I am a very poor lip-reader. I have missed her (the way she used to be) so very, very much. It is good to have her "back." We look forward to the day she walks out of the hospital. That day should be very soon.
God is GOOD! All the time!!!
Suzanne and I are now able to share all your cards and e-mails with her, and they are really blessing her (and us).
Thanks so very, very much to each of you for your love, concern, and prayers. Please continue to pray for Sylvia.
~ Bob (and Sylvia)
October 7, 2004
- Update on Sylvia:
On Thursday, September 30th, Sylvia was transferred to a rehabilitation hospital. They expect she will be ready to come home on Saturday, October 16th, where she will continue to receive physical therapy. She continues to make remarkable progress, but it will stilll take some time for her to regain her strength and abillity to do what she was able to do before she got sick. In the meantime Our Father's Children comic strip will remain on hold while I take care of Sylvia. Please continue to pray for Sylvia (and for me too). Thanks!
God bless each of you with a special measure of His marvelous love and amazing grace!
~ Bob (and Sylvia)
October 26, 2004
- Update on Sylvia:
Since Sylvia came home on October 16th, her progress has been phenomenal! Physical therapy. Walking with a walker. Walking with a cane. Now she has specially-fitted foot and leg braces to correct her foot alignment. We praise the Lord for His wonderful healing mercy! And we continue to thank you, our family and friends, for your love, concern, and prayers!
See photos here.
~ Bob (and Sylvia)
August 2, 2006
- The past two years have been very physically, mentally, and emotionally stressful for us as Sylvia has had one near-death experience after another.
In July 2004 a rare, aggressive, deadly lung disease called BOOP almost took her life. After three and a half months in the hospital, most of which was in ICU, she made an amazing recovery, as many of you know.
In November 2005 she went into the hospital again. This time she had a urinary tract infection and septicemia (blood poisoning). We were told that she was within 24 hours of dying. They also suspected that BOOP had returned and put her back on a heavy dose of Prednisone. Again she began to improve, but she never completely recovered. The prolonged use of steroids has changed her body. She now has extreme Osteoporosis and is three inches shorter than she was two years ago.
In April 2006 Sylvia began getting weaker and required more pain medication. She found it more and more difficult to eat or drink. Early in May the Emergency Room doctor at our local hospital said she had 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. She was placed on two liters of oxygen and sent home. On May 31 a surgeon performed the vertebroplasty outpatient procedure on three compression fractures in her spine.
The next day she was taken to the Emergency Room again. Again she was sent home. Three days later on June 4th she was taken to ER again. Her heart rate was 164, and her kidneys were ready to shut down. This time they admitted her to our local hospital. Three days later she was transfered back to Mission, where she stayed for a month while a dozen specialists and their associates ran all kinds of test, including MRIs, x-rays, ultrasound, etc. 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 needs to be on oxygen. And apparently her gall bladder infection has healed. The drainage tube was removed July 31st.
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.
The Lord has taken us this far. We trust Him to take us the rest of the way through this dark valley, and in the process we know that He is changing us and others for the better. Please remember us in your prayers.
~ Bob West
January 10, 2007
- A lot has happened since our August 2, 2006, update.
Sylvia came home from the nursing home on October 13th. 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 be 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 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 the 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.
On December 10th she 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.
Late Saturday 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 bit 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 we 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 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 bags IV for that along with other IVs. The doctor stopped the Methotrexate while they worked to cure the infections. I don't know if they will start it again later. He said that Prednisone needed to stay at 10 Mg.
On January 4th Sylvia was transfered from Mission Hospital to Thoms Rehabilitation Hospital. On Saturday, Janurary 13th, she will be coming home.
Maybe when she is well enough, Sylvia will allow the surgeon to remove her troublesome gall bladder. Maybe the Wegener's disease will stay in remission. Maybe she will get well enough to enjoy an active life again. I hope so.
I thank God for His healing mercies. And I thank you for your loving concern and prayers. God bless you!!!
~ Bob West
February 21, 2007
Sylvia came home from Thoms Rehabilitation Hospital on Saturday, January 13th as scheduled. Unfortunately, she had suffered another compression fracture the day before (her fifth). 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 and was taken by EMS to the ER where they x-rayed her, found that she had a very painful bruised sternum, but no broken bones, and sent her home. On Tuesday morning, January 16th, 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 to a skilled nursing facility on January 22nd. She continues 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.
On Thursday, February 8th, we signed on with Hospice. They are helping with pain management and in other ways.
Even in her weakened, painful, and drugged condition, she continues to encourage all whom she comes into contact with. God is still using her to minister to others.
I met Sylvia in April 1953. That's almost 54 years ago. We were married December 1, 1953. I thank God for all those years together. But the time we have left is the most precious. I visit Sylvia every day. I am blessed by every moment of it, and Sylvia seems to be as well. Sylvia and I know that the Lord loves us very, very much, and He will do what is best for us and all concerned.
Thank you for your prayers. Please continue.
~ Bob West
March 25, 2007
Jesus' angels took Sylvia home this morning at 4:15. She left me with 54 years of precious memories and a wonderful family. A memorial service is planned for 11 a.m., Friday, April 20 in Brevard, NC. We request that instead of flowers, any memorial gifts be made to TCH Hospice, PO Box 2440, Brevard, NC 28712. To view or participate in an in-progress online memorial honoring Sylvia's life, please visit http://Theophilus.org/Sylvia.
~ Bob West
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