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In August 2016, six-year-old Jakob was admitted to Renown Children's Hospital with what seemed like a common ear infection. Jakob's condition quickly progressed, and he started experiencing neurological symptoms such as difficulty speaking and a full-body shutdown. Doctors, neurologists and specialists from Renown worked with doctors from Stanford, where he was ultimately diagnosed with Bickerstaff brainstem encephalitis (BBE). BBE is a rare, autoimmune response that attacks the nerves in the body due to an acute illness such as a cold, flu or, in Jakob's case, an ear infection. Jakob could not breathe or eat and experienced paralysis on the side of his face, throat, stomach, bowels, lungs and legs. In addition, he started to rapidly lose weight as well as body function. Jakob lost half his body weight which resulted in the need for a Gastrostomy tube. This device is placed surgically and gives direct access to the stomach to give the child the nutrition needed. He also needed occupational therapy, and after three and a half months of ICU respiratory therapy, surgeries and treatments, he was released home to regain his strength. Forever Grateful Anica, Jakob's mom, said, "If it were not for the quick response and unconditional support and compassion from the team at Renown, Jakob would not be here today." Jakob's family is forever grateful to the staff, community and expertise at Renown for their unwavering commitment to their son and family during their most trying time in life. "When I met Jakob on the first day of his illness, so much was unknown. My team and I were worried, as his symptoms were very unusual. His rapid deterioration, after being a perfectly healthy child, was clearly terrifying for his parents. Handing over a child's care to a team of strangers is one of the scariest things that can happen to parents,” said Dr. Kris Deeter, Physician in Chief at Renown Children’s Hospital. “However, Anica and Jeremiah were also very clear that they did not want Jakob transferred somewhere else. So, we used all our resources to care for him, arrive at a diagnosis, and start aggressive therapies. They listened to every word we said, educated themselves, and became partners in Jakob's care. We all became part of Team Jakob, and soon, he proved to us just how strong he was." Today, Jakob is 13 years old and thriving in every aspect of his life. He is currently on the honor roll in school and finds joy in his newfound passion for the violin. He loves spending his free time learning about mixing music, making new friends and traveling to different parts of the country. This summer, he will travel to Europe to explore his passion for culture. The family says, "We owe it all to the family and staff at Renown."

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A wedding is a big day for the wedding couple, but it’s also special for loved ones. A patient at Renown, Ken, got to take part in his daughter’s special day as her wedding plans changed to accommodate his medical condition. Grab some tissues and read how Renown’s team of compassionate caregivers and chaplains planned a wedding in Fianna’s Healing Garden. Ken was hospitalized at Renown Regional Medical Center where he was battling a lung problem – which was unrelated to COVID-19 – and his condition worsened rapidly on Wednesday, Aug. 12. His family made the decision to transition him to palliative care, which helps patients near the end of their lives remain comfortable, while supporting their dignity and quality of life.  Ken’s medical condition altered wedding plans for his daughter, Chandra, and her fiancé, Tyler, who were planning to tie the knot later in 2020. Chandra wanted her father there, but knew he could not leave the hospital. That’s why Chandra’s sister, Heather, approached Ken’s care team with a request to have a small wedding ceremony at the hospital.  Planning the Wedding A member of Ken’s care team, Amy Heston, registered nurse (RN), began planning how the wedding could be held outdoors in Fianna's Healing Garden in the E. L. Wiegand Pavilion, which was donated by the E. L. Wiegand Foundation.   In 24 hours, Amy planned a wedding ceremony with the help of her colleague, Breyanna Aufiero, RN; the Renown Spiritual Care team; and nursing leaders on the coronary intensive care unit (ICU). Together, they decorated the aisle in the garden with flowers and battery-operated candles. They also made a sign for Ken’s hospital bed, which read, “Father of the Bride,” and crafted a bow tie for him to wear for the special occasion.  With visitor restrictions in place at the hospital due to coronavirus (COVID-19), having the wedding outside in the Healing Garden allowed for more members of Ken’s family to attend including his wife, Charlotte, and his dog, Bella.   Every step in planning the wedding required thoughtful and thorough care coordination so Ken could participate. His breathing was supported by oxygen and special arrangements were made to transport the oxygen tanks he needed to take part in his daughter’s wedding. Amy worked with respiratory technician, Kasey Benfield, and critical care technician, Ruben Duckworth, to ensure Ken’s oxygen needs were met using portable machines.  Celebrating Love and Life Together Ken’s team of caregivers bathed him and shaved his face so he could look and feel his best for the ceremony. They put on his bow tie, covered his bed in decorations and his favorite blue, flannel blanket, and wheeled his bed outside for the ceremony.  Renown associate chaplains Terri Domitrovich and Susan Palwick coordinated music and performed the ceremony for Chandra and Tyler on Thursday, Aug. 13, 2020. The bride and groom shared their first dance in the garden and Ken’s care team provided water and treats to give the family a full wedding experience.   Shortly after the ceremony, Ken passed away. This wedding provided Ken and his family meaningful memories for their big life-changing moments as they celebrated and said goodbye.  “Seeing Ken surrounded by family he never would have gotten to see again while in the hospital, watching him get to share a father-daughter dance with Chandra on her wedding day, and having him tell me that this day meant more to them than we would ever know were some of the most moving moments I’ve witnessed as a nurse,” Amy said. “I am so thankful for the team we have here. I know that this beautiful day wouldn’t have happened without the help of every single person who gave their time, money, creativity and passion to make it a day to remember.”

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August is National Make-a-Will month. We talked to Renown Health Foundation Planned Giving Officer, Abbey Stephenson, to learn more about wills, trusts, and estate plans and why you should feel motivated this month to get started. Did you know that 2/3 of Americans don't have a will or trust? If this is you, don’t worry, you’re not alone. Although there are laws in place to determine who inherits your assets if you die without a will or trust, having a will or trust ensures your assets go where you want them to go after you are gone. They can also help minimize disputes between family members and heirs about who gets what. In Nevada, the laws that govern who gets what if you die without a will or trust can be found in Chapter 134 of the Nevada Revised Statutes. There are other documents that people often prepare at the same time as their will or trust – like an advance health care directive and durable power of attorney for assets. These documents all together are called an estate plan. Although they have other purposes too (like nominating a guardian for a child, planning for disability or avoiding probate, which is a court process), wills and trusts are documents that say who will receive your assets after you are gone. The most common type of trust is often called a revocable living trust or a family trust. People who have a trust usually still have a will, although it is a shorter form of will called a pour-over will. It’s a good idea to talk to an estate planning attorney about whether or not a trust makes sense for your family or circumstances.  Now that you’re ready to get started, here are some mistakes to avoid: 1. Failing to plan Not setting aside the time to plan may be the biggest mistake. Failing to prioritize preparing or updating your estate plan means your last wishes and desires may not be fulfilled. The right documents memorialize what you would like to happen upon your disability and death so that other people can know and follow your wishes with respect to your care and your assets.  2. Failing to coordinate beneficiary designations Certain types of assets like life insurance and retirement accounts are not covered by your will or trust and need to be addressed separately. These types of assets are referred to as non-probate assets because they transfer under contract principles and don’t require court supervision or probate to be distributed to the named beneficiaries. By completing beneficiary designation forms provided by the retirement account custodian, insurance company or financial institution, you can direct your assets to one or more beneficiaries. 3. Failing to title your assets properly Asset titling refers to how you own your asset – such as in your individual name, jointly with someone else, or in a trust or entity. For example, assets titled for two people with a “right of survivorship” will automatically go to the surviving owner. Review your asset titling and make changes, if needed, to ensure your property and assets are passed down the way you intend. 4. Failing to include charities meaningful to you In addition to providing for family members and other important people in your life, you many also choose to give to charities meaningful to you in your estate plan. When you include a charity in your estate plan, that gift is called a planned gift and many charitable organizations, including Renown, recognize such donations through their legacy giving societies. As you prepare to make your own will or a more comprehensive estate plan, we recommend you consult with a lawyer. Here are some free resources that may be helpful too:  Renown Health Foundation is proud to sponsor the Family Estate Planning Series put on by PBS Reno and the Community Foundation of Northern Nevada. The free, 8-week course of 90-minute, in-depth workshops is a great place to learn much more and to help you get started in the planning process. The next course begins on September 7, 2022. More information can be found here. Renown Health offers periodic advance health care directive workshops where attendees can learn about, complete, and sign their directive. The next workshop is scheduled for September 14th. More information can be found here. The American College of Trust and Estate Counsel provides information on a number of commonly asked estate planning questions here. If you are interested in including a charitable gift to Renown in your estate plan, we would be happy to talk to you about how your gift will make a difference for our mission. Please contact Abbey Stephenson at abbey.stephenson@renown.org or visit renown.org/LegacyGiving to learn about Renown Health Foundation’s Legacy Giving Society and ways to give.

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