Monday, July 30th, 2018 started out a little groggy. We were both a little wiped from our weekend trip to Bloomington. However, we both were excited to get back to work like normal people. I had a fairly normal day working on the wards. Dustin’s day was also fairly normal.
Whenever Dustin gets home from work, he likes to be left alone and do little tasks around the house to unwind. He has always been a creature of habit. Come home, change into jeans, do some chores, and then chat. He enjoyed simple mindless things like unloading the dishwasher or taking out trash and recycles. He isn’t the type to come home and plop on the couch or be a chatty Cathy dialoging his day. He need a little time, space, and mindless things to reset himself.
Dustin came home and like usual he had a task in mind that he needed to do before unwinding for the night. He wanted to call his brother Greg. He was the only person he wasn’t able to speak with over the weekend. Dustin didn’t want Greg to hear the news from someone else. He went down to the basement into his office and called Greg.
I was upstairs sitting at the dining room table on the phone myself. I was giving sign out to my colleague. She was working night shift and covering my patients. Sign out is basically giving a quick run down of your patients: why they are there, what was done today, the plan, and anything pending that needs to be followed up on etc. We have an electronic sign out too but it gives the nightshift person a chance to clarify any questions or concerns. Tracey is not just a colleague, she’s a good friend too. It wasn’t uncommon for us to have a friendly catch up while giving sign out.
While on the phone with Tracey, Dustin comes upstairs and is standing there just staring at me with his right hand doing repetitive circles and his head rocking a little. I assumed he was quietly trying to get my attention. I look at him and he just stands there, eyes wide open and his right hand and head doing repetitive circles. I was confused. I thought maybe he was indicating I need to hurry up with the hand circling motion. So I tell him, “I’m giving Tracey sign out, I’m almost done. Why are you standing there like a weirdo?” I will never forget the look in his eyes. Dustin was pleading with me, begging me with his eyes for help. I ask him if he’s okay and he shakes his head no.
I quickly say, “Fuck, Tracey. I have to go. I think Dustin is having a seizure.” I hang up and ask him if he can speak. He shakes his head no. I ask if he can understand me, he shakes his head yes. At this point Dustin is very pale and diaphoretic (ghostly and sweaty). So I ask him to sit down on the floor and he does. I grab a wet paper towel and put it on his forehead. I have him squeeze my hands, it’s equal on both sides. I have him take off his work shirt so he is just in his white undershirt and jeans. I tell him that I think he’s having a seizure and I should call 911. He’s just staring at me. I call 911, asking for an ambulance for a 34 year old male having a seizure likely secondary to a brain tumor.
Dustin is lying on the floor of our kitchen and dining room. He’s very fidgety and still unable to talk. It doesn’t take long for EMS to arrive. Firetruck arrives first and I let them in and explain what’s going on. Dustin is very fidgety and trying to take off his pants. I tell him no, it’s fine pants can stay on. He shook his head yes and stopped fiddling with his belt. Then he tries to get up, the firefighter/paramedic tells him to sit down and Dustin starts to panic.
At this point the ambulance is here and they need to get Dustin into the ambulance. Our apartment building is a bizarre maze of small corridors and doors. To get Dustin out of the building they had to use a little portable chair as a stretcher couldn’t clear the tight turns to get outside. At this point I can see Dustin is frustrated and isn’t cooperating with EMS. He’s not able to talk, doesn’t want people touching him, is trying to get away and pushing people off him. I gently remind him that these are the EMS people helping us get him into an ambulance and he looks at me and shakes his head yes. But a few seconds later he’s struggling with EMS again and now saying “no”.
I know EMS deal with agitated and combative people often but I felt like they were really annoyed with him. They could have been a little kinder and less rude. But it is what it is, that’s what we got that day. We were given paramedics who were annoyed with a 34 year old man who couldn’t speak and didn’t want to follow their directions. They were curt and rude. I just kept reminding Dustin I was there and he was safe. I quickly grab my work backpack that has my wallet and a charger. I follow the paramedics outside and lock up the apartment behind them.
As we are getting into the ambulance, I ask where we are being taken. They reply Weiss Hospital. I lost my shit. Weiss is a shitty community hospital and doesn’t have the resources to care for Dustin. I cried and begged them to take him to Northwestern. “Please, please take him to Northwestern. Weiss will kill him!”
The paramedic looks at me with annoyance but says, “No ma’am Weiss is a good hospital and we are required to take him to the closest hospital.” I look at him with pure rage, “I’m a nurse practitioner. I know for a fact Weiss is shitty.” The other paramedic says, “She’s not wrong. But we can get him to Weiss and they can transfer him to Northwestern once he’s stable.” Fine. Whatever. I’m full of rage and tears at this point. Make my life more difficult, I’ll figure it out like I always do.
Dustin is transferred to the stretcher and put in the ambulance. At this point his language is starting to come back but he’s still very, very repetitive. He starts saying the same four sentences over and over again, “I only trust my wife. It’s better if I don’t talk. Tell me to shut up. Thank you.” The doors to the ambo close, sirens are flipped on and we start rolling towards Weiss.
Every minute or so Dustin would say, “I only trust my wife. It’s better if I don’t talk. Tell me to shut up. Thank you.” I’d remind Dustin I was there and to just shut the fuck up. He’d smile and squeeze my hand in acknowledgement. He probably said this 10 times in the short 10 minute ride to Weiss. The paramedics were unimpressed, unconcerned, and annoyed that this this was their call. They probably felt like it was an unnecessary use of resources and an unexciting call. Sure it’s not a trauma or cardiac arrest. But a big brain tumor was pretty legit medically too even if it didn’t require their advanced life support skills.
By the time we are rolled into the emergency department at Weis, Dustin is more alert but still not cooperative with anyone but me. He just kept saying, “I only trust my wife. It’s better if I don’t talk. Tell me to shut up. Thank you.” I reassured Dustin, “you’re safe, I’m here. This is person is the nurse and needs to check you out.” He’d cooperate albeit only momentarily before falling back into his same four sentences.
The resident physician comes in to evaluate Dustin and Dustin has no desire to cooperate. So I tell the physician a quick synopsis of his first seizure, his keppra dose, the mass, and now this. Dustin lets me do a neuro exam on him in front of the physician since he wouldn’t do it for the doc himself. I tell the physician explicitly, “no steroids please, he isn’t supposed to have them as it may obscure the biopsy results.”
At this point, the resident says he will put in orders for a head CT scan and a keppra bolus. This seems reasonable since we still had room to increase his keppra dose if needed. I also mentioned that we were being seen at Northwestern and I’d like to be transferred there.
Dustin starts to be a little more cooperative and verbal but he’s still no where near his normal. He tells me he has to pee and tries to get up. I tell him, no he can’t and the nurse gives him a urinal. I tell him he cannot get up to pee and needs to stay in bed. So I help him pull down his trousers and show him how to use the urinal. He is suddenly so joyful and giggly. I ask him what is so funny. He tells me, “this is sooooo naughty. I can’t do this!” I told him I’d step behind the curtain for privacy but he had to stay in bed. He said okay.
Dustin was really struggling but so amused. “Hey evil wife, what was I doing?” I’d remind him he was trying to pee and he’d giggle. Then he’d say, “are you spying me? naughty naughty wife.” He finally was able to pee and I came back in the room.
The nurse says, “oh looks like he’s back to his baseline neurologically.” I look at the nurse in horror, “uh, this is no where near his baseline.” During the next several hours, Dustin fluctuates between the same four sentences and a little more chatty. I ask if he could have some Ativan because he’s so restless and maybe still having seizures. They didn’t think it was necessary.
The CT tech finally comes to get Dustin. I tell him, “so he’s been very non-cooperative but he will listen to me. You will want me there.” The tech kind of rolls his eyes and I just follow them to the CT room. To them, I’m just another obnoxious, know it all family member. I’m not going to leave Dustin alone. The tech tells me I can’t go into the room. I tell him, you’ll want me there if you want to get decent imaging. Again, the tech rolls his eyes and tells me to stay in the control room.
Dustin realizes I’m not there, and won’t stay still. He’s on the CT table and he’s trying to get up, picking at his bracelet and IV. The tech is telling him to be still and it will be over soon. Dustin replies very loudly, “nope nope nope I only trust my wife. nope nope nope I only trust my wife.”
The tech is getting really annoyed and Dustin is becoming more agitated because he isn’t being understood. The tech goes into the room to try and talk to Dustin and get him re-situated on the table. I see and take the opportunity. I follow him in which annoys the tech and say, “hey Dust I’m here and we got to get your brain scanned again. So I need you to do me a favor and lay really still for just a few minutes. I’m right here and I need to get these pictures of your brain to see what’s going on.”
Like magic, Dustin replies, “okay dokey! you got it tootsie!” He then lays really still and the tech looks at me like WTF. I look at him with the snottiest I told you so face I could muster. I said, “if you keep the door open, I can talk him through this.” The tech finally listened. I kept reminding dustin he was safe and he just had to be really still for a few minutes so they could get the pictures.
The tech slightly relieved that I was able get Dustin to cooperate was reviewing the scan to make sure it was adequate enough. Now the tech goes pale and his face just blanks out. The tech looks at me in horror and asks, “Ma’am doesn’t he have any known conditions?” I reply, “Yep he has a giant brain tumor.” He quickly replies, “oh thank god, I hate it when we find something like this for the first time.” Well, let me tell you mister CT tech…it’s not any easier seeing it a couple weeks later either! He finally understood why I Dustin was so non-compliant but would listen to me.
The tech escorts us back to his room in the emergency department. Now we hurry up and wait. Nothing seems to be happening, so I fire off an email to the neuro oncologist updating him on this and requesting him to get transferred. I get a quick reply from the neuro oncologist that he agrees he needs to be transferred. Great, now let’s GTFO. The resident comes back and tells me Northwestern is full and on diversion. But he’s looking for another hospital that can take him. So I reach out to my hospital and they are also full. They decide that they cannot release Dustin and there are no hospitals available to take him so they would have to admit him there until a bed opens up. Okay, fine, but he’s still not okay can we try some Ativan to see if that helps?
Dustin finally gets a dose of Ativan and it is like he is finally back to normal. He’s able to talk to me normally. He explains what his version of events. Apparently, the call between Dustin and Greg dropped three times which frustrated the shit out of Dustin. Then he felt off and knew he needed help so he came upstairs to me. He said, “I knew something was wrong and I knew I needed you to know something was wrong.” The fact that he knew something was wrong and needed help was crazy to me. I mean, he could have fallen down the stairs! But it’s also incredible that he knew that and executed it. He said throughout everything he could understand me but couldn’t talk. Once he could talk again, he explained that he felt like talking made him feel worse – like he did when he was on the phone with Greg. When he didn’t talk, he felt better. But clearly his brain was short circuiting which explains why he was so repetitive.
Finally, my Dustin was back.
We get moved up to a room on the floor for the night around midnight. The neurology team was his primary service who was admitting him came by to evaluate Dustin. I give them a quick run down of events of July 11th and today. I also tell them what the plan was from tumor board – no steroids until a biopsy could be performed. They ask if I work in healthcare, and I acknowledge that I am a nurse practitioner. I note that I think stress or difficult tasks might be a trigger for his seizures.
They start evaluating Dustin and all is going as I expect until they ask him to spell world backwards. Dustin tries but fails. Immediately, Dustin falls into the head rocking and hand rolling in a circle. I say, “yep that’s exactly what it looked like at home. That’s a seizure.”
The attending looks at me and bluntly says, “we will order some Ativan as needed. But I’ll be totally honest with you. I recommend you stay with him. You know him really well and can identify things we can’t. This is well out of our expertise here at Weiss and don’t treat this kind of stuff here. It’s in his best interest if you stay here and keep an eye on him.”
I said, “I wasn’t planning on leaving him and planned to stay the night with him.” I was a little shocked by his honesty and a little terrified. I mean, I knew Weiss couldn’t handle this as they were a small community hospital. Complicated patients always go to big academic centers. I already had told EMS that Weiss would kill Dustin and begged them to take him to Northwestern. Clearly, I didn’t trust Weiss so it shouldn’t have been a surprise. However that took my confidence in Weiss from ZERO to -500.
I was terrified but managed to doze off a time or two. Dustin slept like a rock. My phone rings at 6am, Northwestern is on the caller ID. I startle to attention and answer.
“Hi this is Nicole”
“Hi Nicole, this Matt and I’m a neurosurgeon at Northwestern. I was going to meet you guys in clinic this week but was told that Dustin had another seizure and was at an outside hospital. Can you tell me what’s going on?”
Give him the run down. Think he had a partial seizure, no steroids given, keppra increased, Ativan given with improvement in mental status, no beds were available, and I want him transferred. He agrees that it was probably a seizure. Since he’s a surgeon he has a little more pull in getting beds. He didn’t see Dustin’s name on the transfer center list, so he was going to put in a request for transferring and ICU bed. He said he would be able to get him over by the afternoon.
Finally, Dustin would get the care he needed. But what the heck, how was he not on the transfer list for a bed? If I were not being a total bossy wife, I’m not sure he would have been transferred. I was annoyed, frustrated, and relieved. Again, how do normal people, people not in healthcare, get timely and adequate care? It’s absurd that as a wife, albeit a nurse practitioner wife, I was working harder to get Dustin the level of care he needed than the hospital who didn’t have the resources to properly care for him.
The neurology team came by to evaluate Dustin. Of course they had no clue that Dustin was being transferred and thanked me for helping them. In the mean time they would get an EEG to check for seizure activity. Okay, whatever.
The EEG tech comes by and runs a spot EEG to check for seizure activity. A social worker comes to let us know that an ambulance was coming to transfer Dustin to Northwestern. So more hurry up and wait. Cool.
Ambulance comes, loads Dustin on to a stretcher, they buckle me into a seat, and off we go. Dustin says, “sigh, another trip in the wee-woo wagon. That’s three trips this month!” Yes, it was his third wee-woo wagon trip this month. Fucking wee-woo wagons. Dustin was pleased that he didn’t need lights and sirens like he did in his first two trips.
It was a short 10 minute ride to Northwestern. It took longer to load Dustin into the ambo and roll him into the ICU than it did for the whole ride in the actual ambulance.
Finally, we were where Dustin needed to be. I helped the ICU nurses get Dustin settled into his room. They were a friendly and knowledgeable bunch of nurses. Dustin wasn’t their typical ICU patient. He was a walkie-talkie. Meaning he wasn’t as sick as the typical ICU patient who often cannot talk or walk and often require life support. He probably didn’t need ICU level care, but it got him a bed faster than he would have otherwise. I was thankful and relieved, no matter how he got there.
Now we hurry up and wait. The ICU team would come to admit him and the neurosurgeon would come by to see us. Given the concern for seizures, they ordered a continuous EEG with video. Dustin had his beautiful head connected to dozens of colorful wires and electrodes. A computer on wheels with a video camera was setup to receive the EEG signals and the camera would be monitoring him 24/7. We’d have more information to work with and any seizure activity would be caught on both the electrodes and videos.
Continuous video EEG is kind of cumbersome and annoying. The electrodes are glued to your head so they don’t move and the adhesive is so stinky. You have to carry around a little purse with the transmitter in it too. The computer and camera are big and bulky and take up a lot of space in the already small room. But we made the best of it. Dustin looked like a cute science experiment and but never complained about it. We would just wait to see the neurosurgeon to figure out the next steps.
Beside you in time 