Dec 14, 2016 Latest post:
May 24, 2017
Welcome to Mackenzie's CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your prayers, support and words of hope and encouragement!
Mackenzie has had Crohn's Disease since high school. Since then, Mackenzie has managed her Crohn's well by giving herself Humira shots, and going to the hospital to receive Remicaid infusions every few weeks. That has worked very well for years, even though the medication makes Mackenzie susceptible to infection.
In September, Mackenzie was very sick and hospitalized at Baylor with what was diagnosed as a viral meningitis. Mackenzie missed a few days of class while in the hospital, and then felt tired for another week or so. Mackenzie then felt "normal", and continued in her classes and other activities at Baylor for another month or so.
On November 9th, Mackenzie started feeling awful again -- fever, headache, pain in her back/neck...and blurry vision. Back to the hospital she went at Baylor for another four day stay. Mackenzie then came home to Kansas City and was re-evaluated at Kansas University Medical Center (KUMC). The doctors at Baylor and KU, in a rare display of Big XII unity :-), agreed that Mackenzie has mono in her spinal fluid.
Usually you get mono in the blood, and you feel tired and awful for a few weeks.
Mackenzie's mono virus was in her spinal fluid, which has made the symptoms much worse.
The virus has impacted Mackenzie's vision, her balance, ability to walk, and her ability to use her right hand.
After some time at home and physical therapy, Mackenzie wasn't really improving, and she wasn't able to speak normally.
So. on December 6th, Mackenzie returned to the friendly confines of KUMC. The doctors were in agreement that Mackenzie's case is an unusual one, and doesn't exactly fit into a specific category of anything they have seen before or seen often. Their best guess/idea/diagnosis is that Mackenzie is battling a condition called auto immune encephalitis (to save you the google search, we'll explain it here -- encephalitis is an inflammation of the brain, caused by an infection).
During her six day stay at KUMC, Mackenzie received steroid treatments two times a day via an IV. KUMC discharged Mackenzie on December 12. Mackenzie now is at home in Kansas City. Mackenzie will continue taking steroids via pill (not IV) for another couple weeks and we will monitor her progress.
Another visit to KUMC is possible in the next couple weeks, as is a trip to the Mayo Clinic in Minneapolis on December 27th.
In summary, Mackenzie has had four hospitalizations, four MRIs (all "normal", which is good!), four lumbar punctures, and many, many doctors and nurses over the past three months. We are thankful to all the incredible nurses at Baylor Scott/White in Temple, TX, and at KUMC.
We also are thankful for all her doctors - Dr. Pfanner (gastro-intestinal) , Dr. Burst (infectious disease), and Dr. Lao (eye doctor) in Texas, Dr. Hawkinson (infectious disease), Dr. Clough (infectious disease), "Dr. Emporia" (his mom is from Valley Center, Dad is from Pakistan, and raised in Emporia -- he has a VERY long and hard to pronounce last name, so we call him "Dr. Emporia" :-)), Dr. Patel (neurologist), Dr. Lichtenberger (neurologist), Dr. Rippey (neurologist), Dr. Ford (neurologist), all at KUMC. We also are grateful to Dr. Jeff Mueller and Dr. Aksamit at the Mayo Clinic. It also has been great to have KU physician friends -- Dr. Wade Williams, Dr. Chuck Horner and Dr. Tim Soper -- explain medical things to us.
Mackenzie is a young woman of faith, strength, and determination. She will rely on all three to pull her through the struggles she currently faces. Mackenzie loves her family, her friends, her life at Baylor, and her Lord. She is surrounded by a network of family, friends and medical staff who pray for and nurture her constantly. Mackenzie and her family feel the love!
More than anything, Mackenzie loves to hear from her friends, and takes great comfort knowing that so many people are praying for her. In order to keep her network updated on the latest goings on with her health, we have set up this site.
We know that through all this God will be glorified. This will be a story of great triumph, and we cannot wait to get to the final chapter.