The Power of Resolve
For three years, 15-year-old Kieren Jackson of Tulare has demonstrated the power of resolve while living with a chronic disease.
“Kieren’s strength inspires me,” said Mainger Jackson, Kieren’s grandfather and guardian. “This child shows me so much. Her will to keep going amazes me.”
When Kieren went with her grandparents to a nearby emergency department as a 12-year-old, her symptoms included a fever, skin rash and stomach problems. She was transported via Air George to Children’s Hospital Central California on Sept. 5, 2011. Persistent fever, headaches and body pain led Dr. Edsel Arce-Hernandez, pediatric rheumatologist, Children’s Hospital, to reach a difficult diagnosis.
“I have lupus,” said Kieren. “It’s an autoimmune disease that attacks my kidneys, heart and lungs, and my body can’t fight infection.”
Systemic lupus erythematosus (SLE) is an autoimmune disease difficult to treat that could potentially cause multiple organ damage. “Every patient with SLE is different,” said Dr. Arce-Hernandez. “Some patients have more manifestations of the disease than others. There’s no known cure for lupus, but there is treatment that could induce remission.”
Kieren’s flares have led to 10 inpatient stays at Children’s in three years, including admissions to thepediatric intensive care unit (PICU).
“You’d have to double-check this,” said Bridget Rios, occupational therapist, pediatric rehabilitation unit, Children's Hospital. “But I’m pretty sure Kieren holds the record for the longest stay in the PICU.”
Whether Kieren broke a record matters far less than the fact the care she received saved her life. Kieren’s marathon PICU stay began with an air transfer from a South Valley hospital on May 4, 2013.
The Value of Expertise
“I was home sleeping and my grandma called me but I didn’t answer,” said Kieren. “She came to my room and I couldn’t move.”
An ambulance rushed Kieren to a nearby hospital, where plans were immediately set into motion to transport her to Children’s. “I was unconscious for 14 days and woke up to a tube down my throat and lines everywhere,” she said. “My grandpa told me that he read to me every day.”
Kieren was admitted to the PICU with a methicillin-resistant Staphylococcus aureus (MRSA) infection. Caused by a “super bug” resistant to the antibiotics that fight ordinary staph infections, MRSA is difficult to treat even in patients without lupus. A concurrent flare of Kieren’s lupus led to multi-organ failure.
“When Kieren’s organ systems cannot compensate for her disease process, that’s where we step in,” said Garrett Kitt, charge nurse, PICU. “If she needs potassium or other electrolytes, we give those to her. If she needs oxygen and her airway managed, we give her oxygen and manage her airway. If she needs resuscitation or dialysis to help with kidney function, we perform what is necessary and give her dialysis, and so on. We work as best as we can with her natural physiology, which isn’t working all that well right now. The PICU staff steps in to help her body function.” Those interventions saved Kieren’s life, and she was transferred to acute care June 11.
“My grandpa thought I was getting better, but I coded,” said Kieren, using medical slang for cardiac arrest. When a patient’s heart and lungs fail, the caregiver calls a “code blue,” which alerts a rapid response team to provide cardiopulmonary resuscitation. The team saved Kieren’s life.
Two days after leaving the PICU, Kieren returned and remained until her transfer to the Hospital’s inpatient pediatric rehabilitation unit Aug. 19.
“A patient is transferred from ‘medical’ to ‘FAIR,’ which stands for full acute inpatient rehab, once they can tolerate that level of therapy,” said Rios. “FAIR involves three hours of rehabilitation therapy daily, and it’s usually one hour each of OT, PT and speech therapy,” she said, using the common abbreviations for occupational therapy and physical therapy. “But Kieren doesn’t need speech, so she spends an hour and a half each day with me and another hour and a half with Randy.”
Randy Mack, a physical therapist at Children’s, provides Kieren’s PT. “Kieren and I have a love-hate relationship,” he said, smiling. “I don’t hate her but sometimes I can tell by her look that she’s not happy to see me. Physical therapy is not very fun at the early stages. She’s already been working hard just to breathe.”
“Sometimes it hurts to walk,” Kieren agreed. “But it’s going good in physical therapy and it’s going to help get me better.”
“With Kieren it’s not a matter of waiting for the pain to go away before we work on her mobility,” said Mack. “She has to work through the pain. And she does. She plugs right through even with pain.”
“Rehab works with whatever the kiddos can tolerate,” said Rios. “If she can’t quite handle an hour and a half of OT after she’s been with Randy, that’s OK. But the next time Randy and I will trade so she gets a full hour and a half with me.”
Mack works with Kieren on strength and balance, and Rios focuses on fine motor skills. “We do a lot of writing, zippers, tying shoes and other everyday things like taking a shower,” said Rios. “It may not seem like it, but washing your hair is a big deal.”
The Blessings of Devoted Care
After a 130-day inpatient stay – with 105 days in the PICU – Kieren was discharged with a home exercise program.
“We’re teaching her grandpa how to work with her when they get home,” said Rios. “He is so wonderful with her – a real blessing.”
Other members of Kieren’s medical team agree. “Her grandfather is always at her side and a very important figure in her recovery,” said Dr. Arce-Hernandez.
“Her grandpa is a big part of helping her get better,” said Mack.
“I have followed Kieren since her diagnosis and she is an amazing girl,” said Dr. Arce-Hernandez. “She is always in good spirits no matter how severe her condition has been. I was surprised when I saw her in clinic after her initial discharge from the Hospital and she knew the name and the schedule of all her medicines.”
When asked what she wished people knew about lupus, Kieren said, “It can be manageable and you can still live a normal life. To manage it, take your medicine, eat the right foods and listen to your doctor. And whatever you’re going through, look at the bright side and know you’re going to get better.”
Kieren looks at the bright side of her adjusted lifestyle. Today, rather than singing and dancing, she enjoys drawing pictures and reading her favorite authors, Shel Silverstein and Kate Osborn. Kieren also enjoys cooking with her grandfather.
“Kieren likes to make pan-fried potatoes with bell peppers and onions,” said Jackson. “She can’t have them anymore, but she still likes to make them.”
“I also like to make pancakes from scratch, and I can eat those,” she said with a nod.
Kieren will continue living with lupus until a cure is discovered, but with her commitment to stay healthy and the comprehensive care she receives from the experts at Children’s Hospital, she will continue living her life to the full.