Jul 15, 2020 Latest post:
Dec 22, 2020
Hi everyone, with Tim's permission we have decided to start a Caring Bridge page to help inform others of the situation, keep them apraised to updates, and field multiple questions. Tim and his girlfriend Tiffany were taking a nine day road trip out west to visit National Parks and explore South Dakota, Wyoming, Colorado, and Nebraska. One night after coming home to a hotel after dinner, Tim began frequently dropping items such as water bottles and his cell phone from his right hand. He was otherwise at his baseline however and had excellent symmetrical grip strength, so they slept the night and proceeded to a walking tour of downtown Denver, Colorado. Tim was his normal self that morning, taking their puppy out to go potty and grabbing breakfast with no evidence of dropping things. While on the tour however, he began once again dropping things and feeling uncharacteristically fatigued. While at lunch, he grew quiet... which for anyone who knows Tim is NOT normal... and began shuffling his words when he did try to speak. This was partnered with considerable confusion and altered mental status.
They went to emergency department where they activated a stroke triage and began working him up. An immediate transfer via ambulance to Swedish Medical Center was initiated and Tim was ultimately transferred to their Neuro Intensive Care Unit.
A CT scan, MRI, and Cerebral Angiogram later, it was discovered that Tim has a rare, progressive blood vessel disease called Moyamoya. Moyamoya is characterized by stenosing, or narrowing, blood vessels at the base of his brain. When looking at radiology images, doctors can identify Moyamoya when they see areas that look like "puffs of smoke" which is the result of his brain creating new vasculature networks to bypass constricted vessels and supply his brain with blood. Tim most likely was born with Moyamoya as it is seen as hereditary/genetic. More often than not, the first sign or symptom of Moyamoya is having a stroke, which we then learned Tim had two strokes while on the course of vacation.
Both major arteries in Tim's brain are fully occluded, but his brain has made alternative blood pathways over the years and years that he has had this condition. Because of this, he needs to have a higher than normal blood pressure to keep blood flowing to the brain; this is the reason he is in the ICU, so he can receive pressor medications to keep his systolic blood pressure around 180, where normal systolic for anyone else would be 110 or 120.
Because of the strokes, Tim has unfortunately been met with some challenges in the realm of his speech and mental processes. He is quite confused and not completely oriented to the whole situation, but Tiffany believes he is superficially aware and makes frequent attempts to bring him up to speed on all that has transpired. His most challenging deficit however is his communication, which has become quite frustrating for Tim. He has expressive aphasia which means that getting words out/word finding, as well as expressing his needs and wants, is difficult. His capacity to speak waxes and wanes throughout the day, but he has been seen by a Speech Language Pathologist who has been wonderful in offering tips.
Tiffany and his nurses challenge him often to work on his communication and remediate confusion which leaves Tim frustrated at times, but we know this will serve him well in his recovery and rehabilitation. He will also be visited by physical and occupational therapy during his hospital stay, which will help Tim and Tiffany learn a new normal as we look towards next steps. We are so thankful that Tim has retained near all aspects of his physical strength and he has been ambulating without needing a cane or a walker.
In terms of next steps, the neurosurgeon suggests managing his condition with medications until hospital follow up which will be done back home in Rochester, MN at the Mayo Clinic. Communication is being established to pair him with the right doctors to expedite his access to a neurosurgeon who will likely recommend surgery as the next step to prevent any further strokes down the road.
Our goal at this point in time is to get Tim well enough to discharge from the hospital, so both him and Tiffany can traverse the 13 hour drive home with their new puppy, who has been staying at doggy day care as they are attending to things up at the hospital. We are on the right track and Tim wants everyone to know that he will be okay! The doctors have full faith for a 95% to full recovery from his current deficits over the course of weeks to months. His age, location and isolation of the strokes, substantial family supports, as well as living with a pain in the ass occupational therapist who will get on his case, is in his favor.
We love you all and appreciate the compassion and concern that's been shown to us through this. The staff at Swedical Medical Center have been top notch and Tim is in excellent hands until we can discharge, which our hope will be in the next couple days.