On August 4, 20104, Grace on Wings was given the honor through our Lord and Savior Jesus Christ to transported Patricia W. to Baltimore, MD, where she would be evaluated by a top neurologist at Baltimore Sinai Hospital, who specializes in the treatment of Adult Hydrocephalus.
In the spring of 2014, fifty year old Trish fell acutely ill with a neurological decline, and was found to be suffering from Hydrocephalus. Hydrocephalus is an abnormal condition that occurs when there is an imbalance between the rate of cerebrospinal fluid (CSF) production and the rate of absorption, leading to an accumulation of CSF in the brain. This accumulation of CSF results in an increase in pressure on the cells and tissues of the brain, which interrupts the body’s normal neurological functioning.
Trish was in need of a surgical procedure to implant a VP shunt, a device that functions to redirect and assist the drainage of the excess CSF. The goal of this procedure is to restore the CSF balance, thus relieving the pressure on the brain tissue resulting in neurological function returning to normal. Trish was accepted by a specialized team of neurologists and neurosurgeons at the Mayo Clinic, and was promptly transferred to the Mayo Clinic at St. Mary’s Hospital in Rochester, MN. Hope for a full recovery seemed within grips for Trish and her family.
During her two month long stay at the Mayo Clinic, with her husband Rick at her side, Trish showed some little signs of improvement. As the pressure around Trish’s brain, referred to as intracranial pressure (ICP), was actively being monitored and restoring to normal limits, she still was not responding with improvements as expected. Rick intuitively began to recognize something was still complicating his wife’s recovery.
It was at that time Trish’s ICP monitor began to reflect numbers below the normal limits. Rick was questioning, with the primary goal of the VP shunt to relieve the increased ICP, why was Trish not responding as expected? These questions prompted her team of physicians to review her case and have a plan of care meeting with Rick. At that time, Rick was advised his wife had a rare condition known as a “Negative Pressure Hydrocephalus”, in which case the implanted VP shunt would not serve to function as a successful treatment for her condition.
He also learned, in fact, the condition was so rare that the last documented patient diagnosed with this condition at Mayo Clinic was twelve years ago. The team of physicians then advised Rick they had no options for the treatment of Negative Pressure Hydrocephalus, and the decision was made to arrange for Trish’s return home in a slightly more than vegetative state.
On May 23rd, Trish returned home to Illinois, and was admitted to Manor Care, an extended care facility in Arlington Heights, Illinois, where she would receive ongoing rehabilitation therapy and needed nursing care. During her stay at Manor Care, Trish progressed slightly, but Rick was determined to find a cure for her rare condition, so he could take his beautiful wife home.
During Rick’s research, he discovered some organizations and associations related to Hydrocephalus research and awareness, then stumbled upon information about an upcoming annual Conference on Hydrocephalus scheduled to take place in July. Rick quickly identified large parts of the conference were focused on young and middle-aged adult Hydrocephalus research and treatment options. He also noted a physician, by the name of Michael Williams, MD, appeared to play a key role in the conference as one of the conference’s medical directors and speakers.
Rick found himself empowered by the information he discovered from this patient-centered conference, and proceeded to successfully make contact with Dr. Williams. Dr. Williams’ review of Trish’s case was enough to draw hope and faith into her family that there was still a chance for her full recovery. A leading authority on the research and treatment of adult Hydrocephalus, neurologist, Michael Williams, MD, is the medical director of the Sandra and Malcolm Berman and Spine Institute at Sinai Hospital of Baltimore, MD. Not long after the Conference on Hydrocephalus, Dr. Williams accepted Trish into his program, and plans to arrange for her transfer to Baltimore were initiated. During her family’s research for transport options, a referral prompted Rick to contact Grace On Wings for her needed travel requirements, and a flight to transport Trish to Baltimore, with her husband by her side, was scheduled.
August 4th would be the first leg of Trish’s new journey, as she will need additional travel arrangements. After Dr. Williams completes his full evaluation of Trish’s illness and further neurosurgical options, she will then be transferred to the Cleveland Clinic, where neurosurgeons will carry out any planned procedures. The coordination of Dr. Williams and the Cleveland Clinic Department of Neurosurgery physicians places Trish in the hands of nationally and internationally recognize physicians in the top of their field with research and treatment of adult Hydrocephalus.
With God’s love and will, Trish’s family remain full of hope and faith that she is one step closer to a complete recovery.
I would like to thank my fellow team members on this mission, Hal, Anna, and Matt for showing the love our Lord to all that they serve.
Please keep Trish and her family in your prayers during this time and let us all reflect on these words from Isaiah for our own lives.
Isaiah 55, Verse 1, 6, 8 & 9
“Ho! Everyone who thirsts,
Come to the waters;
And you who have no money,
Come, buy and eat.
Yes, come, buy wine and milk
Without money and without price.
Seek the Lord while He may be found,
Call upon Him while He is near.
“For My thoughts are not your thoughts,
Nor are your ways My ways,” says the Lord.
9 “For as the heavens are higher than the earth,
So are My ways higher than your ways,
And My thoughts than your thoughts.
Lisa Luckoski, RN