It turns out that my report on October 22 was a bit too optimistic. The two small sections on John's recent surgical scar were not healing well. Despite daily care, infection reared its ugly head. The surgeon thinks perhaps it was not caused by the over-exertion. Rather, John's lingering Guillain Barre Syndrome probably compromised his immune system and allowed the infection to grow.
On this Monday the surgeon examined the infection and X-rays. It looked as though another surgery to remove more bone was needed. Instead, he called back the next day to recommend another option. He will perform "irrigation and debridement" in a surgical procedure scheduled for 10:00 AM tomorrow, Friday, October 31. The plan is for John to come home with a "wound vac" and begin a lengthy process of extensive wound care by specialists for the next few months. If this works, John will be able to proceed with getting a new below-knee prosthetic leg. Otherwise, there will be a knee disarticulation amputation in the future.
Elisa's family is here to help and the house is full of chatter and laughter. We enjoyed a wonderful day at the park in beautiful fall weather. The kids are looking forward to trick-or-treating and we look forward to sharing the loot.
Although this is a major setback, John remains optimistic and calm. He continues to be grateful to be alive and determined to walk in the future. We will keep working together and remain diligent and faithful. Your concern for John's life and our days buoys us up. As always, we ask for your continued prayers for healing.
Thursday, October 30, 2014
Wednesday, October 22, 2014
ONE YEAR ANNIVERSARY - October 22, 2014
One year today. It has been a long year since that drive from Salt Lake City to the emergency room at Chandler Hospital and the surgery that followed. We are so thankful to God for another year of John's life. It has been a battle that John has fought with perseverance, patience, strength and great faith - always focused on the long term goal of walking. We are grateful for each other and each day together.
We are overwhelmed by the love and care by our children and their spouses, our grandchildren and other family members. We are grateful for the prayers of friends and the skill and dedication of so many medical professionals.
Let me fill in on the past few weeks and give a current report...
John's surgery on September 26 was successful and brief. Although plans had been to stay in the hospital for 1-2 nights, Dr. Motzkin felt John was ready to go home the same evening. What a wonderful surprise (although I was a bit apprehensive about providing the homecare). As usual, John did well and we had a quiet week at home with good results. At the 10-day checkup, the doctor was very pleased with the healing and encouraged John to see the prosthetist which he did four days later. Jillian put on a "shrinker" (a tight stretch stocking) to dissipate the fluid and hasten the shrinking which will allow for a new smaller socket.
The end of last week and with beautiful fall weather, we decided it was time to get out and about. On Thursday we made our way around the Boyce Thompson Arboretum with John in the wheelchair for four hours. Then on Friday we went with our family to the State Fair for five hours. Great fun both times! But we overdid. While using his right leg to help pull along the wheelchair John did not realize that the left stump was flexing against its support. He got overtired as well. When we got home, the stump was red, swollen, feverish and very sore. A small portion of the surgical incision had come open and was seeping. Consultations with the surgeon have led us through four days and nights of vigilant care. The seeping continues but has slowed down. All the other symptoms are gone. Thankfully there was not infection. This has set back the progress of the new prosthesis by 1-2 weeks. We covet your prayers of intercession.
Although the two days of outings were very tiring for me, I continue in good health and strength most days. The low salt diet is working. My blood pressure and weight remain constant. Occasionally, I am briefly short of breath - but not while exercising.
Now we are looking forward to Elisa, Stephen and the children arriving for Halloween. That will be great fun, we are sure.
We are overwhelmed by the love and care by our children and their spouses, our grandchildren and other family members. We are grateful for the prayers of friends and the skill and dedication of so many medical professionals.
Let me fill in on the past few weeks and give a current report...
John's surgery on September 26 was successful and brief. Although plans had been to stay in the hospital for 1-2 nights, Dr. Motzkin felt John was ready to go home the same evening. What a wonderful surprise (although I was a bit apprehensive about providing the homecare). As usual, John did well and we had a quiet week at home with good results. At the 10-day checkup, the doctor was very pleased with the healing and encouraged John to see the prosthetist which he did four days later. Jillian put on a "shrinker" (a tight stretch stocking) to dissipate the fluid and hasten the shrinking which will allow for a new smaller socket.
The end of last week and with beautiful fall weather, we decided it was time to get out and about. On Thursday we made our way around the Boyce Thompson Arboretum with John in the wheelchair for four hours. Then on Friday we went with our family to the State Fair for five hours. Great fun both times! But we overdid. While using his right leg to help pull along the wheelchair John did not realize that the left stump was flexing against its support. He got overtired as well. When we got home, the stump was red, swollen, feverish and very sore. A small portion of the surgical incision had come open and was seeping. Consultations with the surgeon have led us through four days and nights of vigilant care. The seeping continues but has slowed down. All the other symptoms are gone. Thankfully there was not infection. This has set back the progress of the new prosthesis by 1-2 weeks. We covet your prayers of intercession.
Although the two days of outings were very tiring for me, I continue in good health and strength most days. The low salt diet is working. My blood pressure and weight remain constant. Occasionally, I am briefly short of breath - but not while exercising.
Now we are looking forward to Elisa, Stephen and the children arriving for Halloween. That will be great fun, we are sure.
August - September UPDATE (posted 10/22/14)
For our history of this journey for John and me, this update is to record events of August and September. Although posted later in October, chronologically this and the July 28 post should
actually pre-date the September 22 posting.
When I left off on this blog in July, we were waiting for Amy's family to return from California. It was such fun to have them with us a few more days. (It turned out that their visit was in the hottest days of the entire summer!) But on Amy's last night here, I was sick again all night...and then again 48 hours later. That Friday night Tom took me to the emergency room where I was diagnosed with a severe gall bladder attack. The doctor kept me in the hospital, I had surgery on Sunday morning and came home Monday evening. What a relief not to have to think about an attack again! Recovery went smoothly and I was soon driving again.
We quietly celebrated our 40th wedding anniversary on August 17th. Generous as always, Tom and DeeAnn prepared a delicious dinner for us in their home. The last weeks in August were pretty routine as I got my full strength back. Several annual doctor visits for both of us, prosthetic check-ups for John and once again regular mornings at the SpoFit gym filled the days.
The BIG change occurred when John's new CANE arrived from Amazon on August 22! He was up and walking with it immediately - it allowed him to walk smoother, faster and much more normal. Over the next three weeks he used it most of the day while he wore the prosthetic leg 12-14 hours a day. This new ability and confidence also allowed him to begin walking around the house a bit even without the cane.
We realized a dream we have had since this journey began - we took a driving trip to Albuquerque to see John's brother and sister-in-law, David and Ann. We were gone five days, September 4-8. It was just glorious to be traveling in the car together again and beautiful through the pine trees of Tonto National Forest.
We celebrated our anniversary again with a gift from our children - the first night was spent at the
La Posada Hotel in Winslow, Arizona. This is one of the string of hotels and restaurants built by Fred Harvey along the Santa Fe Railway in the early 1920's and staffed by the Harvey Girls. It was designed by the famous architect, Mary Colter. "It was the last great railroad hotel...a romantic Spanish castle with 70 guest rooms, fabulous dining and exquisite public spaces." It has quite a history - one of public service, neglect, use by the Santa Fe Railroad as their offices, then restored to a first-class hotel - all displayed in the museum on the grounds. It was a beautiful, restful, peaceful place we thoroughly enjoyed. Dinner in their restaurant was delicious. If you ever have a chance, we encourage you to spend some time there. We certainly hope to return. Many thanks to our children and their spouses for this treat!
We had a lovely visit with Dave and Ann. We were able to see nephew Charles and his family and nephew Andrew and his family. We even drove up to Santa Fe and had lunch with niece Lesley and her husband, Jim. We were concerned about the higher altitudes and my breathing (5000 ft. and 7000 ft.) but I had no problems. It was encouraging - and I was able to do all the driving.
Soon after returning, John had a visit with an ENT specialist at St. Joseph's to look at the continued occasional choking when he eats and also the cause of his wheezing. The suspected cause was scar tissue or a nodule resulting from his several intubations and the long term period on the ventilator. Using a scope, the doctor found the larynx and surrounding area to be "normal" - "What a relief after a year of nothing normal," John said. They will schedule a barium swallow test soon.
The remainder of the month was spent working on our strength at the gym and John walking with the cane. As the Guillain Barre runs its course, he feels his strength on the right leg is about 2/3 what it was when he got sick. Naps are still necessary each day. We were looking forward to his fourth (and hopefully last) surgery on the stump which was scheduled for September 22. (Pick up on the postings for September 22 below.)
actually pre-date the September 22 posting.
When I left off on this blog in July, we were waiting for Amy's family to return from California. It was such fun to have them with us a few more days. (It turned out that their visit was in the hottest days of the entire summer!) But on Amy's last night here, I was sick again all night...and then again 48 hours later. That Friday night Tom took me to the emergency room where I was diagnosed with a severe gall bladder attack. The doctor kept me in the hospital, I had surgery on Sunday morning and came home Monday evening. What a relief not to have to think about an attack again! Recovery went smoothly and I was soon driving again.
We quietly celebrated our 40th wedding anniversary on August 17th. Generous as always, Tom and DeeAnn prepared a delicious dinner for us in their home. The last weeks in August were pretty routine as I got my full strength back. Several annual doctor visits for both of us, prosthetic check-ups for John and once again regular mornings at the SpoFit gym filled the days.
The BIG change occurred when John's new CANE arrived from Amazon on August 22! He was up and walking with it immediately - it allowed him to walk smoother, faster and much more normal. Over the next three weeks he used it most of the day while he wore the prosthetic leg 12-14 hours a day. This new ability and confidence also allowed him to begin walking around the house a bit even without the cane.
We realized a dream we have had since this journey began - we took a driving trip to Albuquerque to see John's brother and sister-in-law, David and Ann. We were gone five days, September 4-8. It was just glorious to be traveling in the car together again and beautiful through the pine trees of Tonto National Forest.
La Posada Hotel in Winslow, Arizona. This is one of the string of hotels and restaurants built by Fred Harvey along the Santa Fe Railway in the early 1920's and staffed by the Harvey Girls. It was designed by the famous architect, Mary Colter. "It was the last great railroad hotel...a romantic Spanish castle with 70 guest rooms, fabulous dining and exquisite public spaces." It has quite a history - one of public service, neglect, use by the Santa Fe Railroad as their offices, then restored to a first-class hotel - all displayed in the museum on the grounds. It was a beautiful, restful, peaceful place we thoroughly enjoyed. Dinner in their restaurant was delicious. If you ever have a chance, we encourage you to spend some time there. We certainly hope to return. Many thanks to our children and their spouses for this treat!
We had a lovely visit with Dave and Ann. We were able to see nephew Charles and his family and nephew Andrew and his family. We even drove up to Santa Fe and had lunch with niece Lesley and her husband, Jim. We were concerned about the higher altitudes and my breathing (5000 ft. and 7000 ft.) but I had no problems. It was encouraging - and I was able to do all the driving.Soon after returning, John had a visit with an ENT specialist at St. Joseph's to look at the continued occasional choking when he eats and also the cause of his wheezing. The suspected cause was scar tissue or a nodule resulting from his several intubations and the long term period on the ventilator. Using a scope, the doctor found the larynx and surrounding area to be "normal" - "What a relief after a year of nothing normal," John said. They will schedule a barium swallow test soon.
The remainder of the month was spent working on our strength at the gym and John walking with the cane. As the Guillain Barre runs its course, he feels his strength on the right leg is about 2/3 what it was when he got sick. Naps are still necessary each day. We were looking forward to his fourth (and hopefully last) surgery on the stump which was scheduled for September 22. (Pick up on the postings for September 22 below.)
Thursday, October 2, 2014
July 28, 2014 UPDATE (posted 10/2/14)
SLOGGING IN THE HEAT, BUT FAMILY ENRICHING OUR DAYS
Hello to anyone still reading these posts. Good intentions don't get much done, so it has been almost a month since the last one. We have hit some bad patches that slowed us down - particularly me. As the last post reported, I came through the implantation of my medical device just fine and returned home late the next afternoon. However, I did develop some post-op complications the next day with a quick trip to the ER and a rocky several days to follow. Elisa and John were wonderful caretakers! At my 12-day checkup with the surgeon, all was well. However, they informed me that I could not drive for 6 weeks! Wow. That was a blow and has put a real burden on my sister and brother-in-law as well as our friend, Mary Danforth. They have continued to be magnificent in caring for us and providing transportation.
Meanwhile, John waited impatiently for his walker to be "approved" and delivered. We got fed up and ordered one from Amazon on July 2 and it was delivered on July 3. He has been walking around the house on it regularly and is very helpful in the kitchen. Grilling outside is easier now and a real help.
We have even taken it to appointments and left the wheelchair at home. Despite fewer visits to SpoFit, he continues to gain strength and mobility. He had one more 4-day bout with trouble on the stump and now has a good temporary "fix" from the prosthetist. John saw Dr. Motzkin, the surgeon, on July 10 and he is definite that John needs a surgical "revision" to eliminate "redundant tissue" and create a smoother scar for the future. This will probably happen in early September when we feel ready after I get stronger.
It took about two weeks post-op for me to feel
more like myself, but during that time Elisa's family arrived and kept us entertained. Poor things - after living in Utah, this is a very hot place to vacation! A lot of time was spent in family swimming pools and having fun with water balloons.
We gathered at our house to watch the fireworks and celebrate the 4th of July. Unfortunately, a real Haboob - a southwest dust storm - blew in with great force and cancelled the city festivities. It also severely damaged the trees in our "cactus forest" out back.
Thanks to all of you who sent me
birthday greetings.
When the Hoods went home, Ava stayed with us and Serena came from Texas (July 8-15). We had such a wonderful time with the girls. They were so happy to be together, polite and helpful. Those two little girls sure can eat - especially after swimming everyday! We had sewing projects and they used the sewing machine for the first time (at 7 and 8). We even got to the zoo one morning at 6:30, but by 10:00 we were melted.
My brother, Terry, and niece, Sarah, took them on an evening hike up the backside of Papago Mountain near here. So many activities were possible because of our family.
Two days of rest, then Paul, Veronica and Dillon arrived from California! It was so wonderful to have them here with all their energy, lively conversation and, of course, Dillon. He is such a bright, happy little boy - growing up quickly. My family provided great opportunities for swimming and gathering with cousins. Unfortunately, on the third day I came down with a severe intestinal bug which knocked me out. Paul left last Monday night and I am still working on full recovery including the need to gain back lost weight over the past month.
We rested a bit and the Sutherlun family arrived from San Antonio. So grand to see them again! We stuck to the house with 110+ temperatures - but, of course, there was the swimming. John was able to get into the pool for the first time and declared it "luxurious!" He loved the freedom.
We also had a grand day at the Musical Instrument Museum in Scottsdale. This is a new world-class museum worth a visit to the Valley. After five days they took off in our van for California to visit Paul's family and participate in the wedding of Joshua's brother.
We will see them again in eight days.
Hello to anyone still reading these posts. Good intentions don't get much done, so it has been almost a month since the last one. We have hit some bad patches that slowed us down - particularly me. As the last post reported, I came through the implantation of my medical device just fine and returned home late the next afternoon. However, I did develop some post-op complications the next day with a quick trip to the ER and a rocky several days to follow. Elisa and John were wonderful caretakers! At my 12-day checkup with the surgeon, all was well. However, they informed me that I could not drive for 6 weeks! Wow. That was a blow and has put a real burden on my sister and brother-in-law as well as our friend, Mary Danforth. They have continued to be magnificent in caring for us and providing transportation.
We have even taken it to appointments and left the wheelchair at home. Despite fewer visits to SpoFit, he continues to gain strength and mobility. He had one more 4-day bout with trouble on the stump and now has a good temporary "fix" from the prosthetist. John saw Dr. Motzkin, the surgeon, on July 10 and he is definite that John needs a surgical "revision" to eliminate "redundant tissue" and create a smoother scar for the future. This will probably happen in early September when we feel ready after I get stronger.
It took about two weeks post-op for me to feel
more like myself, but during that time Elisa's family arrived and kept us entertained. Poor things - after living in Utah, this is a very hot place to vacation! A lot of time was spent in family swimming pools and having fun with water balloons.
We gathered at our house to watch the fireworks and celebrate the 4th of July. Unfortunately, a real Haboob - a southwest dust storm - blew in with great force and cancelled the city festivities. It also severely damaged the trees in our "cactus forest" out back.
Thanks to all of you who sent me
birthday greetings.
When the Hoods went home, Ava stayed with us and Serena came from Texas (July 8-15). We had such a wonderful time with the girls. They were so happy to be together, polite and helpful. Those two little girls sure can eat - especially after swimming everyday! We had sewing projects and they used the sewing machine for the first time (at 7 and 8). We even got to the zoo one morning at 6:30, but by 10:00 we were melted.
My brother, Terry, and niece, Sarah, took them on an evening hike up the backside of Papago Mountain near here. So many activities were possible because of our family.
Two days of rest, then Paul, Veronica and Dillon arrived from California! It was so wonderful to have them here with all their energy, lively conversation and, of course, Dillon. He is such a bright, happy little boy - growing up quickly. My family provided great opportunities for swimming and gathering with cousins. Unfortunately, on the third day I came down with a severe intestinal bug which knocked me out. Paul left last Monday night and I am still working on full recovery including the need to gain back lost weight over the past month. We rested a bit and the Sutherlun family arrived from San Antonio. So grand to see them again! We stuck to the house with 110+ temperatures - but, of course, there was the swimming. John was able to get into the pool for the first time and declared it "luxurious!" He loved the freedom.
We also had a grand day at the Musical Instrument Museum in Scottsdale. This is a new world-class museum worth a visit to the Valley. After five days they took off in our van for California to visit Paul's family and participate in the wedding of Joshua's brother.
We will see them again in eight days.
 |
When things quiet down - meaning we will be sitting home alone with all these great memories of such happy days with our kids and grandkids - I promise to blog again. Meanwhile, keep cool as possible and keep on praying, dear family and friends.
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