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Back in the US-ER
May. 22nd, 2020 07:47 pmThursday. TL;DR — very bad day. Like Kimberly, I'm not even sure I want to write about.
The short: When I came out of the shower, ready to get dressed and head downstairs to work in the morning, I found Kimberly in absolute hysterics in the Living Room. She was on the phone with a friend, sobbing, and repeating everything I said. Within a minute it was obvious that she was having the worst (non-motor) seizure she's ever had.
She'd been sure that I had died in convulsions in the shower. She was hyperventilating and sobbing. She said she was choking on a hairball in her throat, just like Lucy Cat. She couldn't maintain a thought for more than a few seconds. We tried to get her counting red things in the room, and she would find one red thing and then head off in other directions, sobbing and gasping. She kept thinking ambulances were arriving because I'd called 911.
After a few minutes of this, I decided we were definitely going to the ER, and she fought me on this, sobbing that she didn't want to go. I wasn't going to drag her unwillingly, so I asked her if she preferred I called 911 or we went to the ER. She finally agreed to go after a few trips through that logic. I got her dressed, but that required me helping a lot, and she ended up on the floor once. Then we started heading out to the car. I called my dad on the way out, just to let him know what was up.
It was easier in the car because she had her seatbelt on and wasn't moving around, and she was also slowly calming down.
On the way Queen's Hospital called us. That's where the epilepsy center is. Kimberly's friend, who she'd been on the phone with, called them and actually got a live person. She suggested I call, and I just got the voice mail, but I told them we were on the way to the ER because of the severity of Kimberly's seizure, and that apparently got their attention, so they called. Kimberly took the call at first, picking up my phone, and she just couldn't talk to them, so she told them to call again, and this time instead of Kimberly picking up the phone, I did with Julie the Benz. We talked a bit, and the Queen's Man said he was going to write up a report for his boss, the head of the epilepsy clinic, I think.
So until that point I hadn't been sure what we were going to do when we got to the ER: if we were going to turn around because Kimberly was slowly improving, or if we were going to go in. But after that talk on the phone I decided it was best to go to the ER, and have more to show the epilepsy clinic, which just hadn't been super responsive to Kimberly's problem in the months previous.
So into the ER it was. Our second trip since we hit the islands on January 1st, and I think our third trip for Kimberly's seizures (with the previous two being at Alta Bates in Berkeley, which has a horrifically bad ER).
Fortunately, the ER in Lihue is miles better.
And, they weren't particularly busy. (One nurse said they were super-busy the day after curfew was lifted, not the same thing as shelter-in-place, I'll note, when everyone went out and started getting drunk again. But today was OK.)
So here's one difference: the doctor in Lihue took Kimberly's situation entirely seriously. Compare that to the horrible triage doctor at Alta Bates, who pretty much called Kimberly a liar and threatened me. No in this case, Kimberly was past the worst of her symptoms but was still obviously impaired, which was the case at Alta Bates too. But *this* doctor took what she said at face value and responded accordingly. We've sometimes wondered if we woulda-shoulda moved to Hawaii if we'd known about the health problems Kimberly started facing mid-and-late last year. But I have to say the care level of the doctors is a big difference. (The front-line doctors at least; most of the specialists and surgeons in the Bay Area were good or great).
The doc did some blood tests to make sure nothing was obviously out of whack and did a CT to see if there anything new and scary, since this seizure was notably worse than any before.
We were there maybe three hours. I dunno, maybe more. It didn't seem long. (That may in part be because Kimberly ended up asleep and I ended up working on Skotos contracts while we waited for the test results.) Nothing to report really, but nothing to report for the scary new symptoms wasn't horrible.
And the hope was that it could get people moving.
So today Kimberly wrote letters to her primary care doctor, her neurologist, her psychiatrist, and Queen's on Oahu. And somewhere between the terrible episode and the trip to the ER (and the fact that we are slowly stopping throwing sick people under the bus in defense against COVID-19) and the emails we did get some attention.
By the end of the day Kimberly's primary care office and the seizure lab were working directly together. The hope is that they're going to work with the insurance company, get a seizure study OKed, get her the tickets to Oahu and back, and maybe even get me some companion tickets to go there and back to take her there, then there and back to take her back.
We shall see, but as terrifying as yesterday was, today is hopeful.
The short: When I came out of the shower, ready to get dressed and head downstairs to work in the morning, I found Kimberly in absolute hysterics in the Living Room. She was on the phone with a friend, sobbing, and repeating everything I said. Within a minute it was obvious that she was having the worst (non-motor) seizure she's ever had.
She'd been sure that I had died in convulsions in the shower. She was hyperventilating and sobbing. She said she was choking on a hairball in her throat, just like Lucy Cat. She couldn't maintain a thought for more than a few seconds. We tried to get her counting red things in the room, and she would find one red thing and then head off in other directions, sobbing and gasping. She kept thinking ambulances were arriving because I'd called 911.
After a few minutes of this, I decided we were definitely going to the ER, and she fought me on this, sobbing that she didn't want to go. I wasn't going to drag her unwillingly, so I asked her if she preferred I called 911 or we went to the ER. She finally agreed to go after a few trips through that logic. I got her dressed, but that required me helping a lot, and she ended up on the floor once. Then we started heading out to the car. I called my dad on the way out, just to let him know what was up.
It was easier in the car because she had her seatbelt on and wasn't moving around, and she was also slowly calming down.
On the way Queen's Hospital called us. That's where the epilepsy center is. Kimberly's friend, who she'd been on the phone with, called them and actually got a live person. She suggested I call, and I just got the voice mail, but I told them we were on the way to the ER because of the severity of Kimberly's seizure, and that apparently got their attention, so they called. Kimberly took the call at first, picking up my phone, and she just couldn't talk to them, so she told them to call again, and this time instead of Kimberly picking up the phone, I did with Julie the Benz. We talked a bit, and the Queen's Man said he was going to write up a report for his boss, the head of the epilepsy clinic, I think.
So until that point I hadn't been sure what we were going to do when we got to the ER: if we were going to turn around because Kimberly was slowly improving, or if we were going to go in. But after that talk on the phone I decided it was best to go to the ER, and have more to show the epilepsy clinic, which just hadn't been super responsive to Kimberly's problem in the months previous.
So into the ER it was. Our second trip since we hit the islands on January 1st, and I think our third trip for Kimberly's seizures (with the previous two being at Alta Bates in Berkeley, which has a horrifically bad ER).
Fortunately, the ER in Lihue is miles better.
And, they weren't particularly busy. (One nurse said they were super-busy the day after curfew was lifted, not the same thing as shelter-in-place, I'll note, when everyone went out and started getting drunk again. But today was OK.)
So here's one difference: the doctor in Lihue took Kimberly's situation entirely seriously. Compare that to the horrible triage doctor at Alta Bates, who pretty much called Kimberly a liar and threatened me. No in this case, Kimberly was past the worst of her symptoms but was still obviously impaired, which was the case at Alta Bates too. But *this* doctor took what she said at face value and responded accordingly. We've sometimes wondered if we woulda-shoulda moved to Hawaii if we'd known about the health problems Kimberly started facing mid-and-late last year. But I have to say the care level of the doctors is a big difference. (The front-line doctors at least; most of the specialists and surgeons in the Bay Area were good or great).
The doc did some blood tests to make sure nothing was obviously out of whack and did a CT to see if there anything new and scary, since this seizure was notably worse than any before.
We were there maybe three hours. I dunno, maybe more. It didn't seem long. (That may in part be because Kimberly ended up asleep and I ended up working on Skotos contracts while we waited for the test results.) Nothing to report really, but nothing to report for the scary new symptoms wasn't horrible.
And the hope was that it could get people moving.
So today Kimberly wrote letters to her primary care doctor, her neurologist, her psychiatrist, and Queen's on Oahu. And somewhere between the terrible episode and the trip to the ER (and the fact that we are slowly stopping throwing sick people under the bus in defense against COVID-19) and the emails we did get some attention.
By the end of the day Kimberly's primary care office and the seizure lab were working directly together. The hope is that they're going to work with the insurance company, get a seizure study OKed, get her the tickets to Oahu and back, and maybe even get me some companion tickets to go there and back to take her there, then there and back to take her back.
We shall see, but as terrifying as yesterday was, today is hopeful.