Where we were:
Mom and dad were moving out of their house in Branson, MO, and were on a deadline.
My husband Derek and I, and our boys, Xander 3, and Skyler 1, were headed to Branson to help pack, and play baseball with Papa.
Ashlee and Charles were at their home. Ashlee had torn a tendon in her foot the week before at rehearsals.
Anna, Rhonda & Emilee were in a parade with Andy Williams for a Branson celebration.
Dad and mom had locked themselves out of their house. Like many times before, dad had decided to climb up to the second story balcony of the house to enter through the sliding door. As he went to throw himself over the rail, his foot slipped and dad came down. Mom had her back to dad, but a dear friend, Lori, watched the whole thing happen. As dad came down his foot hit a water heater he had just replaced, pulling his leg behind him and he came down on his leg snapping his patella. He also landed on one of his wooden garden boxes creating hundreds of tiny fractures along his whole spine and a goose egg on his head.
As they waited for the ambulance to get there, mom called us girls to tell us the news, and Lori kept dad down. Anyone who knows dad, knows that he just wanted to walk it off.
Derek and I went straight to the Emergency room. We were met there by not only my sisters, but Andy Williams as well. He took the girls straight from the parade to the hospital so that they wouldn't have to waste time getting back to their car.
Mom gave us the news of what exactly had happened. They were preparing dad for surgery to put his kneecap back in place. There was nothing they could do for his spine, but let it heal on it's own. Family friends came and gave dad a Priesthood blessing before he went into surgery and we had numerous family and friends praying for him.
He came out of the surgery without any complications and his healing process began. Dad couldn't start physical therapy on his knee until his back had healed.
In January, though not completely healed yet, dad and mom took a trip to Wyoming to visit family. My family was already there. They stopped in Worland, WY first so that dad could work with our Uncle Ron Christense on his physical therapy. Just before starting Uncle Ron took dad's blood pressure and noticed something wasn't right. So they did a ct scan on his leg and found a blood clot in his thigh. When asked if he had any chest pain, dad answered yes, and another scan revealed a blood clot in his lung. Blood clots are dangerous, but with one that close to his heart he was put on bed rest and ordered to restrict his movements as much as possible. They also put him on blood thinners to break down the clots. After a few weeks dad and mom were finally given the okay to head to Lovell, WY to finish their trip and see family. Dad still had to take it easy.
Once back in Branson, dad was able to continue with his physical therapy and we were seeing improvements.
By April, dad had begun to get massive, debilitating headaches. So mom took him in to see our family doctor at Skaggs Clinic in Branson, Dr. David Afshar. During his check-up Dr. Afshar decided tests needed to be done. A ct scan revealed that dad had a blood clot resting on his brain. Here's the miracle, dad was still on blood thinners, that clot should have never formed. However, if it hadn't, he wouldn't still be with us.
From this point dad was sent to Springfield, MO, where my husband and I live. The brain surgery to remove the clot had to happen as soon as possible.
The doctors had 2 choices for dad's surgery. Either drill a small hole and use suction to pull the clot out, or cut a 4x4 inch square out of dad's skull and remove it from there. The first way would leave less damage and be quicker to heal. The latter would make it so that they could be sure all of the clot was removed. The surgeon decided that drilling a hole would be the best option.
We all stood around dad at 5 am and said a prayer. Of coarse dad made us sing to him, then as we accompanied him into the surgery prep area, he had us sing again. We all went into the waiting area for who knows how long. Very soon after, however, dad's surgeon came out. After they had said a prayer before the surgery was to take place, he had a strong feeling that he shouldn't continue. So he decided that now was not the best time for dad's surgery to take place.
That weekend he had off and a new Dr. came in. Dr. Lee decided that the surgery needed to take place right away and they would be cutting the 4x4 inches out of his skull. That turned out to be another miracle decision for dad, as the clot was bigger than they had anticipated and trying to suction out the clot would have brought on several complications. Again, so thankful for prayer, the power of God's Priesthood here on earth, and doctors who listen to the spirit's direction. Our dad made it through another surgery.
In March of that same year, dad's gallbladder was removed.
After these surgeries, Dr. Afshar suspected a kidney disease and sent dad to do tests and see what could be found.
As results came back from his tests we were told one thing, Dad has FSGS, a rare kidney disease. WHAT? What is that? How did he get it? How does that effect surgery on his brain? These were some of the questions we had, but mostly our hearts hurt. We had already been through so much. DAD, had already been through so much.
What is FSGS?
Each person has two kidneys in their lower back. Each kidney is made up of approximately one million tiny filters called “glomeruli.” Much as a coffee filter keeps coffee grounds in, glomeruli keep valuable cells and protein in the blood. When glomeruli become damaged, proteins begin leaking into the urine (proteinuria). Proteinuria causes fluid to accumulate in the body, and prolonged leakage can lead to kidney damage and even failure. Focal Segmental Glomerulosclerosis (FSGS) is a rare disease that attacks the kidney’s filtering system (glomeruli) causing serious scarring. FSGS is one of the causes of a serious condition known as Nephrotic Syndrome
That's a lot to take in. A kidney specialist, known as a Nephrologist, was brought in. Dr. Woody was great at explaining things to us and she gave us the truth. FSGS is rare and there is no cure. As the kidneys reach failure a transplant can be done. It was time to put dad on a steroid, and this had to be done before they could even go in to do his brain surgery.
Dr. Woody told us that if dad responded well to the medications, it could prolong his life up to 10 years before he would need a transplant, if he didn't respond well, we could have around 4 years.
FSGS has many side effects High Cholesterol, Blood clots, congestive heart failure, water retention, and so much more. Because of the blood clots they needed to put a greenfill filter in right before his heart so that it can capture any blood clots before they reach dad's heart.
The medications that dad had to be on for his kidneys, negatively effected the healing of his head. The medications to help his head heal, hurt his kidneys. It felt like the two things that were supposed to be healing him were cancelling each other out.
By April, dad had started getting headaches again. This time accompanied with sharp pains, a little swelling in his head, and small lapses in memory. Dad didn't have a fever, so the doctors told mom to keep an eye on him. By the time his appointment came around in June, with his brain surgeon, it looked like there was half a baseball under his skin where the surgery had taken place. Dad's speech had also started slurring and he wasn't walking straight. As Dr. Lee began to take a sample of the fluid under dad's skin, he immediately stopped and told mom that they needed to get him to the ER as soon as possible. My sisters were doing a show at the time, so mom called me and I rushed to the hospital. Waiting for someone to come out of surgery feels like years. When Dr. Lee finally came out, he took mom and I into a room. He informed us that dad had 3 staph infections. They weren't caught early on because the Prednisone that dad was on for his kidneys was masking the side effects brought on by the staph. The piece of skull that they had screwed back on, had been compromised, and because of that they could not put it back. Dad would have to go without a piece of his skull until they could be sure the staph was gone and then would proceed to fit him with a prosthetic. My Grandma Helen flew in to help while dad recovered. His stay in the hospital was longer this time so I took turns with mom staying overnight with him. The hospital staff wasn't real excited about Mom and me sleeping on a chair in the ICU, but we refused to leave him alone this time.
Dad's healing was a lot longer this time. He had to have speech therapy, and because they had to remove that piece of skull, dad had to wear a padded hat every time he got out of bed. It was later referred to as "the helmet". Dad HATED the helmet, and would take it off as soon as he would sit down. He sported a lot of bandannas, and I have to say he did it well.
Dad had to go 3 months before they fitted him for the prosthetic and were able to do the surgery to put it in.
The scar from the surgery didn't completely heal and left a small hole where dad's prosthetic was. Dad kept getting infections and they just kept putting him on antibiotics.
The steroids that they had dad on caused the reaction of water weight. Dad's weight changed drastically almost weekly. At one point he had gained over 80 pounds in water weight, and there was nothing that he could do to stop it.
In March 2012 dad and mom moved to northern Wyoming where our mom's brother Ken had a job waiting for mom. Wyoming weather was a lot better for dad's health but things continued declining regularly from the infections. It didn't just affect his head but his entire body. Mom and dad knew that his head needed to be seen again so they sought out a neuro surgeon in Billings Montana named Dr. Stire.
In the beginning of 2013, the prosthetic was removed, all infections were cleaned out again and a titanium mesh was put in place of the prosthetic. Titanium mesh is a lot less likely to get infected and therefore safer for dad and his health.
In June of 2014, dad went in for blood tests and we were told that his kidneys were only functioning at 27%. Almost year earlier they were at 40%. By the end of July his kidneys were functioning at 21%. By the end of August they were at 13%.
In the middle of September, I decided to pack up my 5 children and made a long 2 day trip to Wyoming to help out where I could. Timing was perfect because the day after the kids and I pulled in, Emilee went into labor and mom left to help her out in Utah for a week. I was able to stay and help take care of dad.
At the end of September, dad's kidneys were functioning at 8%, and now October 14, 2014, his kidneys are functioning at 5%.
Dad went to the University of Utah on October 8th, and met with the doctors that will do his transplant. My cousin Christian, who is dad's doner, went with him as well
October 13th dad had a surgery for a port for Peritoneal dialysis, the surgery went well. Mom will get trained and eventually this will be something that can be done at home so dad isn't having to travel hours for the dialysis 3 days a week. Until then, there might possibly be a chance that dad will have to start with Hemo dialysis until a spot opens for the peritoneal.
We will continue to update this post as time goes on...
Thank you for your thoughts and prayers in our dad's behalf.
~Kathrine