The Night Everything Changed

March 29,2024

To read a a detailed account of the first few hours of Roger’s stroke, go to the “Our Story” webpage. This entry picks that story up when we arrive at the Intensive Care Unit.

The first night in the ICU was brutal. We had no idea if Roger was going to make it through the night. We knew that he was actively bleeding deep in his basal ganglia. This is a region that neurosurgeons do not want to venture because it would likely kill him. So the only tool we had was to monitor his status. All night, we watched his vital signs and his responsiveness. He was in critical condition with a heart rate often dipping to 30 beats per minute (60-80 is normal) and high blood pressure (all signs of intracranial pressure). Since he was only responsive to painful stimuli, we had to apply deep pain every hour to see if we could get a reaction. Over the next 24 hours, he had to have 9 CT scans when he became hard to arouse or his vital signs crashed. Nine times they wheeled him away and I did not know if he would come back alive. The CT scans were assessing whether his ventricles (fluid filled spaces in his brain) were shifting due to the pressure. If this was the case, they would put a shunt into his brain. But each time, he pulled through. The doctors kept telling me that the next 5 days were an important window where the swelling would run its course and his recovery would feel like a roller coaster.

Here is a list of Roger’s baseline symptoms during the first 48 hours:

• Paralyzed on the right side of his body (arm and leg). Started to show some reaction to pain on that side as the hours passed.

• Unable to talk - occasionally he would mumble and try to communicate.

• Fed via a feeding tube.

• Wore brain monitors to assess the deep brain seizures that were likely happening during the first 24 hours.

• Unable to see out of his right eye.

• The doctors tried to put an arterial line in him to manage his blood pressure, but he ripped it out.

I want to send a huge shout out to Jen Lachman for showing up to the ICU that first night to sit with me and hold me whenever they wheeled him away. I remember a few times when Roger was crashing and I was yelling at him from the end of the bed to not leave me or the boys. I kept yelling that we needed him and that he could not leave us. The doctors seemed frustrated by my scared hysterics (it was a bit like a soap opera). However, I like to think that my voice, my touch, and my presence made a difference. He pulled through every time he crashed - he was fighting to come back to us.

I wish I could remind doctors to not discount the power of touch and stimuli from family when a patient is in critical condition. Yes, the doctors and nurses have lots of tools and need space to medically intervene, However, I believe that my touch and my voice also kept Roger with us when he was fading out.

I also remember one word that has haunted me from that first night. When the admitting neurologist in the ICU asked me about Roger, he made it clear that this stroke was very surprising in such a fit and healthy person. Since Roger did have a history of borderline high blood pressure, that was one likely cause that we all latched onto. The other possible cause floated by the doctor was brain cancer. The floor fell out from under me when those words were mentioned. A lead weight hit my stomach and the numbness I had been feeling all night intensified. The doctor did reassure me that cancer would be a rare and unlikely diagnosis but he wanted to make sure it was on the list of possibilities. It would take many months of hope and reassurances from doctors before we had to truly face cancer. In a way, I am glad that we had time to prepare and focus on Roger’s stroke recovery. I know I was not ready to tackle cancer when we were fighting for Roger’s life in those first few days.

You can hear my hope and my courage in the following message that I sent out to friends and family on day 2.

“We have a long road ahead of us. Obviously, there are so many variables that can change things along the way. So we really are just told to take it one day at a time. It is way too early to know what his long term recovery will look like and how much function he will gain. But the brain is an amazing and resilient organ. He is young and FIT and he is already showing good progress despite the severity of the trauma. He will not be returning to work this academic year.”