Right after surgery it takes a little bit of time for the nurses to settle the patients in the ICU. I knew this so I waited. As soon as I was notified that I could come to the neuro ICU to see Dustin, I ran to see him and assess how he’s doing myself.
When I walked in the room, Dustin was sleeping and pale. I quietly walked over to him and said hello. He woke up and smiled at me. I love that smile. He was pretty groggy, a little silly, and a little nauseous. But he was Dustin. He knew who I was, could talk to me, and had no obvious deficits. His hair was a sticky, bloody, and matted mess. He had a large incision that looked like a backwards C on the left side of his head and over a hundred staples. There was just a small strip about 1 inch wide where it was shaved and the incision was in the middle of the shaved patch. He had a small JP bulb drain on the back of his head under the scalp that was draining fluid from around the surgical site.
I was relieved to see Dustin and see that he was okay. I pulled up the large recliner chair right next to his bed and sat next to him. I remember feeling – wow this much better than I expected. The nurse did a neuro exam and asked who I was. Dustin looked at me and said, “that’s my evil girlfriend! EEEEEVIL girlfriend!” He was so proud of himself and laughing so hard. When Dustin and I started dating, we always called each other boyfriend and girlfriend. I wasn’t at all surprised that he called me girlfriend because even after we were married we’d occasionally call each other girlfriend or boyfriend because we had done so for many years prior to getting married. Dustin was just so pleased with himself. He then told the nurse, “that’s my wife but when she’s not nice I’ll call her evil girlfriend.” It was cute and silly. That was Dustin. He didn’t often show that side to others, but he was coming out of surgery so it didn’t alarm me. I was just so excited he was still Dustin and he felt well enough to be playful. But this was before the expected brain swelling started. Little did I know, things would be very different in just an hour or two later.
Dustin was really annoyed with his Foley catheter which is a urinary catheter. Urinary catheters are common in long surgeries and in the immediate post operative period. It’s a small tube that goes from the urethra up into the bladder and is held in place with an inflated balloon. It naturally drains the bladder via gravity or user input. The patient doesn’t have to use their muscles to release the urine.
Anesthesia and surgery can impact urine production, sensations, and ability to urinate. It’s just safer to have one during long surgical procedures – it drains the urine so the bladder doesn’t become too full and gives important information on the patient. Urine output one of the vital things tracked as you expect a certain amount of urine production. Too much, too little, color, etc give clues on how the patient is doing.
It didn’t surprise me that Dustin had a foley catheter and that it was an annoying sensation for him. I’ve worked with post operative patients with urinary catheters for a decade. It isn’t uncommon for people to be uncomfortable with urinary catheters. Especially men, as tubing itself can often create the sensation of needing to pee and is just uncomfortable sitting with that sensation. Nurses know this, and we often just let patients know that they have a catheter, it’s draining the urine for them, not to fidget with it, and it will come out in the next day or so. Usually redirecting and telling them the purpose and plan works. Not for Dustin.
As Dustin’s brain began to swell, his ability to communicate, retain new information, and follow directions quickly became impaired. He had trouble finding words and communicating. He had trouble retaining information and was very, very impulsive. Dustin went from being a groggy and slightly silly but still normal Dustin to a very anxious, impulsive, and frustrated person. The change from a basically normal Dustin to this version of Dustin was not subtle or slow. It was basically instant and I was not prepared for that.
Dustin kept fidgeting with his catheter and I would redirect him and his nurse would redirect him. But his ability to stop only lasted a few moments, not more than a minute. The constant redirection became frustrating for him because he couldn’t understand. Then, this stupid ass intern comes in and tells him “just pee, the catheter isn’t stopping you from peeing. So just pee.” Dustin immediately is STRAINING to pee which makes that sensation infinitely worse.
Fucking hell, this intern was so unhelpful and actually made things so much worse. I immediately corrected the intern. “Dustin, don’t strain to pee that isn’t how it works. The tube drains the urine from your bladder via gravity and without any force from you. Let me check to make sure it’s not kinked and positioned so it drains quickly.” Then showed him the urine in the tubing noting it was draining. Dustin told me that I didn’t know what I was talking about the because the doctor said he had to force it out. The nurse was so upset and said, “no that doctor is brand new and doesn’t know what he’s talking about. Your wife is right.”
Dustin’s cognitive abilities continue to nose dive from there. It was so drastic and so traumatic for him and for me. He couldn’t find his words and communicate. Unfortunately, Dustin was perfectly aware of what he wanted to say and he was perfectly aware that he couldn’t find the words he needed. Being perfectly aware of what was going on and not being able to execute it is really fucking scary. One of Dustin’s biggest fears was being unable to communicate. He knew what he wanted to say, but couldn’t. So the relatively minor irritation of the urinary catheter became totally overwhelming.
Dustin started panicking. I’ve never seen Dustin so fucking terrified in my life. His inability to communicate and the fear in his eyes was setting off alarm bells in my head. It didn’t take long for me to panic too. I ran and grabbed the nurse. Dustin was looking at me with eyes wide open. He was clearly using his eyes to communicate with me and they were begging for help. Dustin grabbed, my hand while staring at me with the biggest most terrified eyes and said, “HELP!”
“HELP…..HELP” is all Dustin could say. He said it over and over again. It was reminding me of how he was during his seizures. The nurse did another neuro exam and Dustin could follow commands but he could not answer questions or identify items. It was utterly terrifying for Dustin and for me.
We figured out that Dustin could answer yes or no questions. So the nurse and I would ask yes or no questions to narrow down what he needed. It was so incredibly frustrating for him.
Nurse: “Are you in pain?”
Dustin: “NO!”
Nurse: “Are you thirsty?”
Dustin: “NO. WE NEED TO GO!”
I look at Dustin a bit confused.
Me: “We need to go?”
Dustin: “YES YES YES”
Me: “Where?”
Dustin: “GOOOOOOOOO”
Me: “Do you want me to leave?”
Dustin: “NO NO NO NO NO ABSOLUTELY NOT.”
Me: “Do you want to go home?”
Dustin: “YES BUT NO”
Me: “Do you want to go on vacation?”
Dustin: “Obviously. BUT NO.”
Nurse: “Do you need to go pee?”
Dustin, with a huge relief on his face….”YES YES YES YES YES YES GO GO YESS!!”
The nurse tries to tell him again about the purpose of the catheter, why it is important, and it’s just a sensation.
Dustin: “NO!!”
I look at the nurse, “can we just take out the catheter? I’ll help him with urinal.”
Dustin: “YES!! GO AWAY CATHETER!! PLEASE! HELP!”
The nurse went to go ask the ICU team if we could get rid of the foley. I explained to Dustin that the sensation to pee will be there for a while and he may not be able to pee right away but we keep trying until he was successful. The look of relief on his face was instant.
The nurse came back and took out the foley. Dustin was obsessed with trying to pee. As I accurately predicted, it took a while before he was successful. The first couple of times he peed, he was ecstatic. He was instantly much more comfortable.
But the word finding was still so bad and scary for Dustin. He still had the EEG monitor on and it wasn’t detecting any seizures. He went for a post operative head CT scan just to make sure things looked okay and didn’t have anything majorly wrong. It was fine, just normal swelling as expected. He’d have a MRI in the morning.
His steroids were started and his cognitive abilities waxed and waned. Once they kicked in, his word finding improved albeit never getting back to his baseline. Once he was due of his next dose of steroids, word finding was worse. The first 24 hours after his surgery were a roller coaster between panicking, worsening word finding, improving word finding, sleeping and repeating. Dustin would panic so hard he’d be crying which would also make me cry because I couldn’t make it better. We were both constantly on edge.
Dustin really struggled with finding words which was terrifying and frustrating for both of us. The impulsiveness he was experiencing made him want to get up out of bed immediately without help or do things without thinking about the logistics of it. I was always “on” to jump up and help or prevent him doing something that was unsafe. It was exhausting. However, the impulsiveness ended up being a little bit of a blessing because it made him a little more comfortable and confident in trying words even if he knew they’d be wrong. Sometimes, he’d say the wrong word and immediately say no that’s not it. So you knew his brain was working, but just not quite firing on all cylinders.
That first 24 hours after surgery we quickly learned how to communicate with each other. It became second nature to me to identify if he was just having trouble with finding words but was still cognitively intact and how to prove that. I quickly learned how to tease out what he was trying to say. I quickly learned how to help him find the right word with using clues. Dustin would always look at me for help when he needed it. I’d tell him to try first and give clues after he tried.
The common questions nurses and doctors will ask during a quick neuro check are very simple and usually the same.
- What is your name
- What year is it
- Who is president
- Where are we
- Who is the woman next to you
Sometimes they would have you identify some common objects. They would ask, “what is this?” and they would hold up items such as a pen, phone, ID badge, eye glasses, TV, etc.
When the steroids were at peak concentration Dustin was much more speedy and accurate. When the steroids were at the lowest or trough concentration, he was slower and had a lot more difficulty. Sometimes he was delightfully proud of himself and sometimes he was angry and frustrated with himself. But I quickly figured out a few things I knew he’d always be successful at “finding”.
The nurse pointed to her ID badge and asked Dustin what the name of it was. He was so delighted to inform her he knew exactly what it is. Dustin proudly said, “GIRLFRIEND!!” and looked at me knowing he wasn’t quite right but knew he was very, very close. I giggled.
The nurse was confused, thinking that both of us were off our rockers. She immediately said, “No, I’m not your girlfriend.” Dustin said in such an offended, no duh tone, “No you’re not girlfriend!” and points to me. So I asked Dustin, “Does your girlfriend have one of those?” He was so excited that I knew what he was trying to say. He replied, “Yes! you’re my girlfriend and have that too!” I asked him, “Where do I wear that that?” He thinks about it and says, “to the hospital!” I said, “yep I wear that to the hospital. It helps identify who I am. The word you’re looking for begins with a B!” Dustin immediately says, “BADGE! ID BADGE! HOSPITAL ID BADGE!”
The nurse was both amused but also in awe that we could communicate and understand each other when things were so hard. Sometimes, when things were really hard for Dustin his frustration would get the best of him. When he was frustrated, word finding would get more difficult for him. But I randomly found a question I ABSOLUTELY knew he could always answer quickly and accurately. I don’t know why or how I knew that he would absolutely know the answer because the question was very odd and obscure. It’s more of an inside joke between us. But he could always instantly find the answer to the weird question and it always instantly lifted his mood.
Me: “Hey Dustin….what does Shakira say?”
Dustin: “HIPS DON’T LIE!!” and then he’d sassily shake his booty in the bed and laugh.
He couldn’t always find his name, my name, what building we were in, who was the president was, or what year it was. But he always knew that Shakira says, “hips don’t lie”.
As soon as I asked what Shakira says, Dustin’s mood lifted and his confidence was restored. Even if he had trouble finding a word, I could give a hint and he was almost always instantly successful in finding the word he was looking for.
The first 24 hours after surgery were physically, mentally, and emotionally exhausting. But I loved that he was so tickled by calling me “evil girlfriend” and his little booty shake when he answered “hips don’t lie” in a sing song voice. Dustin was struggling which was terrifying for both of us. However, I knew he was still there even though sometimes it was deeply hidden in the brain swelling. I was oddly proud of both of us. I felt like we had unlocked a marriage superpower that was reserved for elderly couples – the ability to love and communicate in our very own language. It was a beautiful gift to know each other so deeply and to work together effortlessly to reach a common goal.
Beside you in time 