Coping with a Medical Crisis, One Tweet at a Time
After last week, I really feel that those who would diss people who use social media to reach out during times of crisis honestly don’t get social media. Those of you who follow my Twitter feed or are Facebook friends are probably aware of the crisis my family experienced last week, and which triggered this not-terribly-original observation. A recap follows, via Facebook updates (most of which were pushed from Twitter, so they’re pretty brief), with a little added context to fill in the blanks.
Starting just after 6 AM on Thursday, May 12:
In the ER. Paul has had 2 seizures in the last 3 hours. I'm scared.
I had been awakened at 2:50 AM by sounds I’d never heard before, and a wildly thrashing husband in the bed beside me. I somehow managed to subdue the thrashing (I'm 4'8" tall; my husband is 6'1" and outweighs me by close to 100 pounds), but I couldn’t wake him or get him to respond to me, so I called 911. Five paramedics arrived quickly and managed to bring him around, but he had no understanding of what had happened. He went to the emergency room via ambulance, and I followed. By the time I got to the hospital, he was awake and resting, but confused.
Paul has no history of seizures and nothing showed up on a CT scan, so the ER was preparing to send us home when he had a second seizure. That changed everything.
They're going to admit him. More later. Please keep him in your thoughts/ prayers.
The CT scan after the 1st seizure looked OK, but they've now ordered an MRI as well. This has never happened before. He's resting now.
It was well over an hour before anything else happened. I contacted a few people (directly) and tried to read while Paul slept a bit. At 9:40 AM they came to take him for the next test.
He's about to go back for an MRI. Just hanging out in the meantime.
Just found out Paul will be admitted after the MRI's done. Hope we learn something before too long - and that there's no 3rd seizure!
There wasn't a third seizure that day (and since he was started on anti-seizure meds in the hospital that he's now taking twice a day, we hope there never will be one).
By noon the MRI had been taken and Paul was in a room. The hospital has been newly renovated and expanded, and this was easily the nicest hospital room I’ve ever seen.
Just hanging out at the hospital. Paul's MRI was normal, which is good, but now there will be more tests coming. He's sleeping now.
In other news, hospitals can be noisy and boring places where you wait around a lot. Thursday at 12:03pm
Early afternoon on Thursday was taken up with more tests - an EEG for the neurologist who was assigned after the second seizure, a lumbar puncture, and a lot of bloodwork ordered by the infectious-disease specialist who was called in on a consult. Paul was lucky enough to have his own doctor, who knows his medical history well, overseeing the team. While they were keeping him busy, I reluctantly took a break.
Went home for a bit to shower & change while Paul has more tests. Stepdaughter & her mom are holding down the fort @ the hospital.
I was back in the room before Paul was - all that testing took a good couple of hours.
Paul's back from a bunch of tests, more comfortable & alert now. Will definitely be staying in the hospital overnight, though.
It was a long day. His ex brought both the kids by to see him, but once they all left, a little before 6 PM, it was pretty much done.
Paul just dozed off. He definitely needs the rest! I'm going to try to read, but I may doze off too! Thanks for all the support today.
Thank you, friends, and good night from Simi Valley Hospital! Hopefully we'll have all Paul's test results by tomorrow & can go home. Thursday May 12, 9:11 PM
Friday began in Room 104:
Morning news: More tests for Paul today after a quiet night (yay sleep!). Once results are in, we hope he can leave - Sat. latest.
Starting off early: Paul's already gone for a second CT scan. Hopefully they'll give him some breakfast afterwards.
In a lull here at the hospital. Guiltily taking my husband's advice to go home for a bit to shower & have breakfast. Back later. Friday May 13, 8:40 AM
A little past noon:
After the crisis, the boring: waiting for test results that will determine when Paul gets discharged. He'd like to go NOW. A good sign?
The discharge paperwork is almost ready. Just waiting...and waiting...and waiting on 1 doctor's input. Hope he shows up soon. Paul wants OUT!
As it happened, we were waiting for two doctors’ input - and when Paul was asked if he still wanted to go home even if it was late in the evening when we got it, he said yes. We were home a little after 9 PM on Friday.
I updated Facbook from home on Saturday morning:
We got to spend last night at home, and it was very quiet. Other than some back pain and exhaustion, Paul doesn't seem to be doing too badly physically at this point. He's still asleep. I know he needs it!
Today we have some prescriptions to fill, and Paul will have to make a bunch of follow-up appointments with his medical team. Sadly, he won't be able to get to them on his own. He won't be permitted to drive until his neurologist clears him, and that could be as long as 3 months, depending on further test results and stability on anti-seizure meds. Those of you who know him can imagine how he feels about that - at present, that may be the most upsetting thing about this whole situation for him.
Given the relative locations of our home, jobs, kids' other home, and schools/summer activities - let alone Paul’s continuing medical treatment - this family is looking at some INTERESTING transportation challenges in the short term, folks. If you're local and willing to help out with driving if needed, please message me! (His ex has already volunteered to shift some of the transporting-the-kids responsibilities for the time being.)
I only have one regret about my online activities; one person - who should have been told directly - inadvertently learned about the crisis via my Facebook updates. Paul’s mom was traveling cross-country last Thursday and was inaccessible via phone for several hours. When I tried to contact her, the call went to voicemail... and since this really wasn’t the kind of news I wanted to leave a voicemail about, I just kept trying.
My mother-in-law rarely checks in on Facebook, so I really wasn’t worried that she’d find out that way - but I’d forgotten that I’m also friends there with Paul’s cousin and aunt, who did see my updates. Unfortunately, they called my mother-in-law before they checked in with me - she had no idea what was going on, of course, since I hadn’t spoken with her yet, and was understandably quite upset and confused when we finally did talk to her.
I hope she forgives me before too long... because yeah, no one should find out about her son’s medical emergency from Facebook, and I never meant for that to happen.
Aside from that, though, I stand by this update I posted around 10 AM on Thursday morning:
REALLY appreciating the support of all my Twitter. Facebook & IRL friends on this very stressful morning! Thanks for being there, y'all.
Florinda blogs primarily - but clearly, not exclusively - about books at The 3 R's Blog: Reading, 'Riting, and Randomness.
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