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While this blog is not specific to caregivers of stroke survivors, I think it’s important for you to understand what happened to my wife, what transpired during the first few minutes, hours and months, and where she is now in her recovery. This timeline will help me explain what I’ve gone through over the past 18 months.  One of the major difficulties of dealing with a stroke survivor is that every stroke is different. This is not like treating most other debilitating disorders as every person will be impacted differently, and that means as a caregiver, you not only have to be flexible at the beginning but you must stay flexible as time marches on.

Note: I’m trying to put as much as I can in simple terms but this subject can quickly get very complicated. I’ve provided links that will offer explanations and examples.

Here is a very simplified timeline:

  • Feb 11, 2017, Early afternoon — J’s stroke occurred while she was waiting for our daughter’s karate class to end. She was sitting on a bench, likely reading email on her phone when she collapsed and had a seizure.  Thankfully, the staff reacted quickly and called an ambulance. She was taken unconscious to a nearby hospital, examined, and given a CT scan. The scan showed a severe stroke had occurred in the thalamic region of her brain slightly to the left of center. This type of stoke was determined to be hemorrhagic, not caused by an aneurysm or clot — in other words, a blood vessel just started leaking. These types of strokes only account for 20% of all strokes but they have a very high fatality rate. There is a lot to be learned about this type of stroke and strokes in general, but I’ll save that for another post or two.
  • Same day, mid-afternoon — The neurologist on call quickly determined what had happened which is vitally important in this type of situation. Quick treatment is critical to reducing the initial impact of the event. For example, if J had been home when the stroke occurred and not immediately transferred to a hospital because no one knew this had happened, she likely would not have survived. The neurologist quickly arranged for transport to a regional medical facility that has a world renown neurology department. I first saw J right before she was transferred roughly two hours after the event.
  • Same day, late-afternoon — Once moved to the new facility, J was immediately admitted into the NICU – Neuro Intensive Care Unit. This team examined her, administered some medications to stop the seizures, performed additional CT scans to determine if there was still bleeding activity and how wide an area was affected and developed a preliminary plan for treatment. Importantly, with J’s stroke, the bleeding itself once stopped was no longer a concern. The issue becomes the hydrocephaly that ensues because, in her case, the blood interfered with the normal flow of intracerebral spinal fluid.  The neurosurgery team implanted the first of two external ventricular drains (EVD) that would relieve the pressure inside her skull. J was on a respirator to protect her airway, heavily sedated but showing some awareness.
  • Feb 18 — The first MRI was performed — the results would come later. I started to experience the firehose of information about what was going on coupled with a deluge of questions about J’s medical history and her wishes. First important lesson learned — caregiving starts immediately and preparation is critical. Needless to say, we were not as prepared as we should be — more to come on that in another post. Meanwhile, J was stable and seemingly past the most critical moments, though her future was far from certain.
  • Feb 19 — A cerebral angiogram was normal. This indicated that there didn’t appear to be any vascular malformations — an important thing to determine as it could indicate the prospects of a second stroke. Using different methods (angiography, MRI, CT scans) is important since each reveals a varied view and, in J’s case, a lot of the structures were obscured by the residual blood still filling the cavities in her brain and skull. J continued to show some awareness but was very restless so she needed to be sedated.
  • Feb 20 — An attempt to place a second EVD was unsatisfactory so arrangements were made to do it again in an operating room using neuronavigation which would allow for precise placement. The procedure was completed successfully, and talk began about attempting to take J off the ventilator.

The immediate crisis was over, and J’s chances of survival were getting better every day, however, we had little understanding at this point of the impact of this on her ability to function. The hardest part of the initial timeline was yet to come.