The effects of Dustin’s seizures, surgery, and swelling had a significant impact on Dustin’s cognitive abilities. Thankfully, they improved over time but it was really scary the first few months after surgery.
The rest of Dustin’s hospitalization was relatively uneventful. He was on continuous EEG monitoring for seizures after surgery. From what we could tell, he wasn’t having any seizures which was great. So he was to continue the two anticonvulsant medications. Dustin was a little annoyed by this but he also didn’t want to have seizures. Ideally, once his brain had time to heal and we were through the chemo and radiation, we could consider tapering off them assuming he remained seizure free.
However, it was increasingly clear to me that Dustin’s cognitive function wasn’t getting close to returning to baseline which worried me. He was very impulsive and would try and hop out of the chair or bed without realizing he was under blankets, with his feet propped up, and a bedside table under his chair. All he knew, was he needed to get up. Most of us would realize that we needed to get up, push the bedside table away, remove the blanket, and safely stand up. Dustin wouldn’t see these obstacles, he’d just try and stand up with all this shit around him only to realize he was tangled up in the moment. His ability to troubleshoot wasn’t great either. Instead of pushing the table away, he would try to crawl underneath the table.
The foresight and tasking we do when getting up is controlled in our frontal lobe. There are a lot of steps and things we do subconsciously. Dustin just couldn’t do this. This is called executive functioning. Anything that required a lot of steps, planning, or memory was really hard. He knew what he wanted to do, but couldn’t execute it like he normally would. Dustin’s ability to focus was profoundly blunted, often forgetting what he was doing within a few seconds.
Dustin’s impulsive behavior wasn’t limited to movement. It also impacted how he would eat. Dustin is normally a very picky eater, doesn’t over eat, and takes his time to eat. Now, he’s eating anything placed in front of him and eating it at warp speeds. Some of this is impaired impulse control some of it is due to the steroids making him ravenous. It was super concerning to me because it seemed like he wasn’t even chewing adequately.
Dustin was also lost his ability to filter his thoughts and speech. Prior to all this, Dustin was blunt and direct but he knew how to say things tactfully. But after surgery, whatever came to mind just came out. Sometimes it was just the wrong word, but other times it was inappropriate.
Overall, his mobility was good. Just prone to falling because he was so impulsive. But his motor skills were strong and stable.
What does all this look like? Well, I’d be walking with Dustin around the floor. I’d try to have him find things on our walk. Find a sign with white and red stripes. Find a nurse with purple glasses. Find your hospital room. Count how many laps we have walked. Stuff like that. I started with one task at a time. If he didn’t see it right away, he’d totally forget what he was looking for. So say we were looking for the nurse with purple glasses. Then he would say something like, “Oh look! I found it!” and he would point at a patient coming out a room with a walker and say, “I found a cripple!!” I’d have to explain that we weren’t looking to find another patient walking and that we don’t call people a cripple. He knew we were looking for a person but forgot who we were looking for.
The surgeon was really pushing him to be discharged home. But I knew that we were not safe to go home quite yet. I also knew that the time immediately after a brain injury is very crucial for his cognitive abilities. This is called neuroplasticity – or the ability for the brain to rewire itself after injury. So I pushed for speech therapy, occupational therapy, and physical therapy to do an evaluation. I’m so glad that I pushed for it.
The speech therapist and occupational therapist administered the Montreal Cognitive Assessment (MoCA). This is a rapid screening instrument to assess for mild cognitive dysfunction. It assesses different cognitive domains: attention and concentration, executive functions, memory, language, visuoconstructional skills, conceptual thinking, calculations, and orientation. The total possible score is 30 points; a score of 26 or above is considered normal. Dustin’s score was 12 which is really bad and suggestive of moderate impairment.
The speech, occupational, and physical therapists recommended acute inpatient rehab. Thank god, because I had no idea how I was going to manage this at home and I wanted Dustin to have the best chance to succeed. Naturally, this pissed Dustin off because he wanted to go home but he also knew this was important for his recovery.
Once everything was lined up, Dustin was to go to Shirley Ryan Ability lab just down the street. This is where he’d get several hours a day of intense sessions of physical therapy, occupational therapy, and speech therapy so he could practice and master things he had lost since his surgery. We called this brain school.
To recap:
- Dustin had surgery on Friday August 3rd. He spent a couple of days in the ICU to recover then was transferred to the neurosurgery floor.
- On Monday August 6th, he had his therapy evaluations.
- He was finally transferred to the acute inpatient rehab facility on Tuesday August 7th.
Not bad considering he had a major brain surgery. We weren’t sure how long he’d be at Shirley Ryan as an inpatient. But this would get him plugged into the right resources for his treatment moving forward. Our best guess at the time was one or maybe two weeks.
Beside you in time 