At 1am on Thursday morning I woke up for some reason. I noticed my silenced phone’s screen was lit. I looked and saw my girlfriend, Julie, had called multiple times. I went to sleep early and she’s been having insomnia, so she stayed up to watch tv. Usually when you get multiple calls from a person in your house, something must be wrong.
I found her on the floor in the bathroom. She looked like she was in pain. She’d been having muscle spasms in her side, so I figured she needed help getting up. Her hand was ice. I looked at her and saw it was something more.
“I need a ambulance. I need to go the hospital.” She said. I asked if I could drive her because ambulances are not cheap. She repeated her need for an ambulance and I called 911.
Turns out that call saved her life. She was struggling to breath, was ice cold, though she complained she was hot. Her heart felt funny. She thought she was dying. Being the pessimistic optimist, I thought maybe heart attack, but quickly shifted to “just a panic attack”. She hadn’t been sick, and no indication of anything wrong.
The paramedics arrived after about 15 minutes and it was a flurry of questions and rearranging things so they could get the gurney in. I gathered some things and followed them to the hospital. They didn’t turn on their lights and I could see her in the window. All good signs, I thought. I pulled into the parking lot and went to the ER. They took my info and had me wait. About 20 minutes someone took me to a small waiting room in the ER. I scan WiFi in hospitals across the country and I recognized the “waiting room” was actually a “consultation/bereavement” room.
After about 10 more minutes the doctor came in with a social worker (red flag!). I expected to hear about her panic attack, but things look like they’ve settled down. Instead, I was informed that her heart stopped shortly after she arrived and they were currently doing CPR on her. I was oddly calm. My head was racing, but I turned into crisis mode and tried to focus on a logical standpoint. The doctor said they think it was a blood clot and they’re doing everything they can, but wasn’t very hopeful.
He asked if I was spiritual and if we wanted a chaplain. I didn’t want one. That would be giving up.
The social worker talked with me a little while and eventually they came back with an update. Her heart was beating in its own again, but she was on a ventilator and unconscious. They said I could see her, but I wound up having to wait outside for little bit before she was ready.
During this time, I was thinking about how I would contact her family. I’d met them briefly during the holidays, but I didn’t have any contact info. I tried reaching out to as many friends and family as I could on Facebook, but it was super early in the morning, and Facebook communication isn’t exactly reliable or easy if you haven’t friended the recipients. A little after I finally saw her, the nurse suggested I try her cell phone. I tried, unsuccessfully, to unlock it with her fingerprint. I noticed the emergency button and thankfully it had her eldest Son’s phone number. I called and sent a text. Again, it was like 3-4am, so I wasn’t expecting an immediate response.
I only had a few minutes with her before they moved her up to ICU. Because of COVID-19, they have strict visitor policies of 8am to 8pm, and only one visitor a day.
I made my way home, shell shocked. I tried to get some sleep before the flood of returned calls and messages, but I knew I wouldn’t be able to sleep. An hour later, her son called. We eventually figured out her passcode, and I contacted everyone else. Her eldest sons told me they were heading up from Texas. I gathered everything for visiting hours and headed to the hospital.
I had hopped I’d get there and she’s be awake and ready to go home. I brought her clothes and such in case my optimism paid off. It didn’t. She had suffered a Massive Pulmonary Embolism, and was critical, but stable.
I don’t have a way to really tie this post up with a neat bow or moral to the story. I’ll include the Facebook updates I’ve been posting on her page/sending to relatives.
I guess the three things to get out of this is:
Make sure your phone’s emergency info is up to date.
Don’t think too much about the cost of an ambulance before calling 911, especially if the person asks.
Things can happen in an instant. You can’t really plan for them, but you can react. Worrying accomplishes nothing, so focus on something productive like plans and “what if” scenarios.
Day 1:
Update: She’s in the ICU. Not much has changed. Stable, but unconscious and on a ventilator. They’re working on controlling her bleeding from all the blood thinners, then they’ll give her a CT scan. I doubt she’ll be awake anytime soon, but if something changes I’ll let everyone know.
Update 2: She’s probably to going to remain unconscious for 3 days while she stabilizes. They’re focusing on stability right now and will worry about other areas, particularly neurological, later. She has pupil dialation/response, so that’s a positive sign.
Update 3: In what I wish to believe is a positive sign: she’s tried to wake up a couple times and she gets very agitated whenever you touch her (believe me, I’ve found this out many times the hard way). The nurse said it could just be a randomized neurological reflex, but anyone that know her knows she’s both a very light/active sleeper.
It can be hard to watch sometimes, but I see it as a sign she’s fighting.
Update 4: Her blood has thickened enough that she’s stopped bleeding and they could adjust her tubes and such. She’s going in for a CAT scan sometime tonight and they’ll know more of how well the medication is working and if there are any more clots or internal bleeding.
She really hates when they X-ray her. She’s tried to wake up several times, each time seeming more aware. She’s blinking like she would normally, so I see that as a good sign. The last time she opened her eyes she cried a few tears and could swear she squeezed my hand.
Her son, Todd is heading over tomorrow, so I’ll share whatever news comes out tomorrow.
Day 2: She went through all her scans and it looks like the immediate concern of more blood clots has been taken care of. Next step will be letting her body recover and finding out if she has any problems that will hinder her recovery, including neurological damage.
Very shortly after she arrived at the ER, her heart stopped and she was given CPR for 45 minutes while the blood thinners kicked in. She’s extremely fortunate that she was already being worked on when it happened. If the ambulance had arrived a few minutes later, who knows? They think that’s reason to be optimistic about little neurological damage, but they’re very cautious about saying anything that will get our hopes up. We’ll have to wait until she wakes up. They’re keeping her sedated for the time being. Based on what I saw yesterday, I feel she’ll have no problem waking up once they stop the sedation.
Update: No news is good news so far. They intend to keep her sedated for another day or two. I’m what I see as a positive sign, a nutritionist called to gather info on her eating habits so they could prepare for feeding her (first directly, then, eventually, orally).
Day 3: sorry for the late update. The last few days have caught up with me and I’m catching up on some sleep.
No news is good news at this point. Her son Danny is with her today. She’s settled into her sedation medication and has been fairly peacefully sleeping. She’s still reacting to things happening to her and seems to notice voices, so we see that as a positive sign that she’s strong neurologically. Granted she’s still unconscious and her reactions are subtle, but they’re deliberate. Good sign neurologically. (Sorry for the overuse of that term, but there isn’t anything better).
It looks like tomorrow is the target date to let her wake up. I’m sure there will be a lot of questions answered and a lot to update then.
Day 4: not a whole lot to report (yet). Doctors came in and said everything looks positive. They’re going to start lightening her sedation and work on getting her to breathe more in her own.
Once that’s stabilized, they’ll continue to let her wake up.
Update: She woke up a little and they’re working on her breathing right now She can’t move her eyes much, but you can see the recognition. After a few minutes, she’s falling back asleep. I stopped talking to her so
She can get some rest. You could tell she was fighting it. The next step is to get her to respond to commands. Then they’ll think about removing the tube. They said it not likely they’ll remove it today, but everything “depends”.
Update 2: she’s woken up a few times. Each time she seems more and more alert. We just finished a get one call with her kids. When she saw them, she furrowed her brow. It’s nice to see her sense of humor is intact! She’s almost able to move her eyes and she raised her eyebrows in response to her Son asking her to.
Positive sign and what she needs to do to get the ventilator off.
Update 3: She’s been awake a lot. At first it was good to see, but later it was clear that she was waking up because she’s uncomfortable with the ventilator tube (who can blame her).
Unfortunately, it’s a necessary evil. She’s more uncomfortable because she’s more awake. The doctors finally upped her sedation and she’s sleeping comfortably again. I suspect they’re getting a little annoyed with me telling them she’s coughing, etc., and I’m not one of those that hits the call button for every little thing.
Day 5: Not much to update. She’s pretty much the same as yesterday. She’s pretty much breathing on her own, but still has the ventilator tube if she needs assistance.
She’s in and out all day. She mostly wakes up because her lungs get too much fluid in them and she tries coughing. The nurses come in and suck the junk out and she falls asleep again.
She’s moving her eyes a tad more and can wiggle her toes and move her left hand on command.
Again, the doctors don’t like to speculate/estimate, but tomorrow might be the day they take the tube out.
BIG update: physical therapy came for the first time and worked her out. She answered questions with head nods. She knows where she’s at and what year it is. She also had significant movement compared to anything g since she’s been here. She lifted her legs by herself, move her head a bit, and moved her arms with assistance.
Unfortunately all that movement caused her to throw-up (It’s also her first day “feeding”) so everything was cut short while they took care of everything and changed her clothes. They had to sedate her as well.
Day 6: The PT lady came back for another round this morning. Unfortunately she’s been on heavy sedation all night, so it wasn’t quite as productive on a cognitive level today. They had her into a sitting position and moved her around a bit. She looked out of it (again, last night’s sedation).
On a positive note, they faced her towards the window and the chair/couch I’ve set up camp at. It’s a lot easier to see when she’s awake, and I can talk to her without trying to angle myself around all the equipment. Plus she has something better to look at than the ceiling.
Update: Not much to report. Today was a frustrating, “hurry up and wait” day. If all goes well, she should have her tube out tomorrow. Neurological exams looks good.
Day 7: More Hurry Up and Wait. Same as yesterday, but that’s starting to become concerning. They really want to do an MRI, but they’ll have to settle for a CT scan because she has an implant.
The Nerologist came to look at her. She can communicate by blinking, but she’s barely moving and not feeling much pain. They said it can be a wide variety of reasons, but as I feared, the word “stroke” came up as a possibility. They still don’t know much and there are still a lot more tests to be done.
Hopefully we’ll learn more after the tests. The most promising thing to get out of this is that she’s still there mentally and she can communicate. She also doesn’t have the glassy eyes look she had yesterday.
It’s more of a waiting game, and they said it might be a long one.
Day 8:
A lot of info this morning. They’re monitoring her for any additional blood clots.
They did a CT scan, more on that later.
They’re doing an EEG scan to see what activity happens when she does certain things, like cough, moves her eyes, etc.
As far as the CT scan, they did find some damage that could affect her coordination on the right side of her body. It’s way too early to know how much, or if it’s permanent.
All things considered, I would be surprised if she didn’t have some sort of long term issues after this.
Her mind seems otherwise intact. She’s communicating by blinking and responding to commands as best as she can. Today is already looking better than yesterday as far as her reactions.
Not much else. I’m hoping today will show some progress in the right direction. The good thing is she hasn’t gotten any worse, so we’ll just have to be patient
Day 9 (!):
Basically the same as yesterday. She just finished Physical Therapy where they strapped her to a table thing and leaned her upright for about a half an hour. She’s still responding via eye blinks, but no significant movement.
They’re looking at her spinal fluids later today. More precautionary than anything. The Dr doesn’t expect to see anything pop up.
I’ve been a little vocal about her sedation, especially at night. I know they know a lot more about medicine than I do and I trust their judgment. It just seems like a cycle: she improves a bit during the day and the night crew comes in an pumps her full of sedatives.
I asked bluntly if they knew what was causing her, for lack of a better word, temporary paralysis. They don’t have a good answer (which is a good thing). She definitely has some damage to her brain, but how much and how permanent are still up in the air. Some of it could just be swelling and trauma recovery. The more tests they do, the more they can narrow it down.
Day 10:
Lots of things happening today.
First things started off on a sour note. Her
MRI came back showing potential damage to her brain. Unfortunately (or fortunately) they don’t know how bad, or if it’s permanent, etc.
Neurology came in later and clarified it a bit, but it’s still basically “we don’t know”. The positive things are she’s aware and communicating.
Later in the day, they finally took out her tube. The first thing she said was “Hi”. She’s commuting with words like yes, no, I know, and okay. It’s frustrating at times because she wants to tell me something and I have to guess what it is. Usually it’s she’s hot or cold, or she’s hungry (even though she can’t eat right now).
There’s a guy I call Dr Downer who kept coming in an telling her crap like the worst case scenarios from her MRI and asking if she wants us to resuscitate her if she has another heart attack.
He needs to work in his bedside manner 😑
To end on a positive note; they’re talking about moving her out of the ICU tonight or tomorrow.
Day 11:
She looked good this morning. Still lethargic, but awake and answering with yes no and okays.
She’s been complaining she was hungry and we found out why. They stopped her nutrition yesterday when they took out the tube in case she threw up. I think they forgot/didn’t know about it last night. They started her back up again. Hopefully that’ll help with some of the lethargy. I know I’d be a couch potato if I didn’t eat for a while.
We’re watching hockey now. Sometime today they’ll move her out of ICU.
Update: Not a whole lot of progress today, but considering the mountain we climbed yesterday, it was understandable. So today was a Netflix and chill day.
Julie and I watched game 5 of the 2018 Stanley Cup to see the Washington Capitals (her fave team, not mine... GO AVS!) defeat Vegas for the Cup. Later, we saw the (virtual) Colorado Avalanche defeat their AHL affiliate, the (virtual) Colorado Eagles in a simulated game, announced by the Avs crew.
After that, we watched a few episodes of The Office. Finally, I decided to go a different route, and watch something a bit more abstract, Disney’s Fantasia.
She looks better, but she also looks exhausted. She was awake and alert the whole day. She said she didn’t get much rest last night, so I’m hoping tonight will be a little better. The Doctors said they’ll give her a little “help” tonight. I think her body and mind need a little rest before we start working on recovery.
Day 12:
Physical Therapy came by early today and worked her out. She has good control of her core. She can move her head and hold herself upright. She leaned side to side, but still no significant movement. Neurology said they don’t know exactly why she’s not moving. She has feeling, reflexes, etc.
I have noticed she’s a bit more responsive and involved if she’s challenged and engaged a bit like physical therapy. She’s sitting in a chair looking out the window. That’s such a big improvement from even yesterday. Hopefully we’ll be able to wheel her around in a day to two.
Day 13:
I’d been a little disheartened the last few days. She hadn’t made much progress. This morning gave me a good recharge.
During her PT session, she was a lot more talkative and added a few more words to her vocabulary. She was able to move her legs and hold them in place. She did a little arm movement, but the focus was on her legs. My favorite part was when she was told she has been here for two weeks she said “Wow!”
Shortly after was a FaceTime call with her sons. She was super happy to see them and surprised us all by saying a few sentences, including “I love you” and “I miss you”.
After a busy morning, we’re watching classic movies she has on her queue.
Her labs look good and her heart looks normal. They’ve been promising to move her out of ICU the past three days, but there isn’t a bed available in another ward, so we’ll see if today’s the day.
Update:
Such a busy day! No move yet, but they keep promising we will.
I asked when she’d be able try drinking again and the Doctor shrugged and basically said “why not now?”.
We started with ice chips which were quickly consumed. Then some water through a straw, applesauce, and a graham cracker. She was mostly interested in the water. After drinking a bit, she was quite talkative.
I made her ask me whenever she wanted more water throughout the afternoon. She had some chocolate pudding and sprite for dinner.
It was a little emotional as she was finally able to ask some questions and discuss her situation. Despite being a little down with her situation, she knows how far she’s come and how lucky she is to even be upset about her situation. She said “I hate that this is so difficult” but I told her that I’m glad it’s difficult, because “easy” would have been a far worse scenario.
I’m incredibly excited to see what the next few days have in store!
Day 14:
Sorry for the late update, but it’s been a busy day! Julie had two therapy sessions today. She moved her arms and legs a bit more than she has before and was able to move her fingers a bit. We usually have to move her a bit to wake up the muscles so she can move a little on her own.
I received a bit of info on her PT schedule and methods. Turns out I kinda overstimulated her yesterday with a few hours of movies. I know more about “uptime” and “downtime”. It looks like it paid off because she took a 2 hour nap during a downtime session, the longest she’s napped in a while.
Still no room move. It’s become a bit of a running joke now.
Finally, her sense of humor is still intact. She smiled and laughed a few times, including a witty remark and mischievous grin when she told the PT lady that instead of going back to her bed, “[She] just wants to get the whole thing done and over with”
Day 15:
Another day of PT another step forward towards rehab. Once again we were told they’d move her today and once again, we’re still in the same room. That might change soon, though. Her doctors are now focusing almost solely on rehab.
Her speech is getting better every day. She goes between periods of high and low energy, but during the highs, she speaks a lot, in full sentences. In signature Julie fashion, she also
chooses to use complex words instead of simple ones.
Movement improved today. She moved her arms and hands a little, shrugged her shoulders for the first time, and did 10 leg presses pushing up her own body weight.
She’s understandably frustrated, but determined. “It’s because I’m a bad-ass” she said.
Day 16:
I think we’re getting past the major victories phase and into the mundane, “baby steps” phase. She’s still increasing her mobility, but it’s more minute things like hands grasping or toe wiggles.
She was a bit nauseous partly due to experimenting with solid foods (mac n cheese was “disgusting”, chili “wasn’t bad”). The other part was, er, stopped up plumbing.
We’re also celebrating day 6 of being promised a move to the rehab rooms.
We ended the evening watching a thunderstorm roll through. Pretty neat viewing it from the 10th floor.
Day 17:
Pretty quiet. Her stomach/intestines aren’t working 100% so she has some painful gas and occasional nausea.
No PT today, but I tried to mimic what they do the best I could. She has better hand movement today and could lift her legs a bit.
She surprised me when we were practicing her holding and drinking from a cup. She (intentionality) moved her other arm in sync with the one I was helping with.
Day 18:
I’d been joking to myself that “this will be the day I walk up and find Julie isn’t in her room anymore”. As of today, it’s no longer a joke. She finally moved down to the rehab floor!
Today was a combination of super busy and super sleepy time.
This morning lots of visits from new doctors and nurses. One thing I like about this floor
Is the nurse comes in every 4 hours and does a minor PT session, encouraging movement.
Julie was able to touch her nose today among other accomplishments. She also graduated out of the mostly puréed foods and into more solids.
The other nice thing about her new floor is that it’s so much quieter than the ICU floor. She’s been sleeping off and on all afternoon, which is a pretty big deal considering she barely got any consistent sleep in the ICU.
I’m hoping the focus on rehab and her ability to get some quality sleep will fast track her recovery.
Day 19: Baby steps. Our biggest goal is to get the feeding tube out of Julie’s nose. She’s slowly getting upgraded on what food she can eat. We’re out of the puréed and chopped up foods, though they still cut the hell out of everything they send up. I have no idea what they were thinking when they cut up her sandwich yesterday.
PT was good. They’re prepping her for (assisted) standing soon. She has good core strength and coordination, it’s a matter of everything else coming back on-line.
Day 20:
She had a minor setback with her stomach issues. She had to go through the day without eating or drinking.
Otherwise, more improvements to her movement. Her left arm is ahead of her right one. She was able to reach out and touch the PT person’s hand at twice the speed of yesterday.
Day 21:
Back to eating and drinking. Her stomach feels better, but we’ll have to wait a little before they’re confident enough to take out the nose feeding tube (which she hates).
More progress on everything. I think they’re going to try getting her to stand (with assistance) soon!
Day 22:
Stand and deliver! Julie stood today, briefly on her own power. I honestly expected tomorrow would be the earliest, but again, she’s ahead of the curve.
Even better news is that she finally lost the nose feeding tube. That’s (understandability) been her biggest complaint. Now I guess she’ll have to find a new short term goal.
Everything else is progressing. She’s gaining more control over her left hand and arm. She was able to hold her fork and bring food to her mouth several times in a row.
After the holiday weekend, we’ll be discussing which new rehab facility she’ll be going to. This will focus more aggressively on rehab and is her next stop before eventually coming back home!
Day 23:
I’ll probably start posting updates every few days from now on. She’s still making great progress every day, and I’m happy that’s been about all to report for a while now!
Monday or Tuesday we’ll know more about the next step in rehab. Right now it’s lots of repetition and rest.
R-Day (Rehab Day) 0:
It’s official. Julie has moved to a full-time rehab facility in Broomfield (ugh). It’s far, but it had the earliest opening. She and I agreed it’s best to keep aggressively working on her rehab so she doesn’t have any setbacks while waiting for a closer facility. Unfortunately, they moved her in the evening, so she won’t start her new schedule until tomorrow. The room
Is much nicer and designed for various stages of independence. Plus the building is very small and quiet.
Progress-wise, she was working in standing and transferring to a chair. She can stand for a little bit while holding something. Her right hand is “a week” ahead of her left. She can grasp things and has decent finger dexterity, but her wrists and strength are still recovering.
Medically, she doesn’t have anything worth worrying about.
I’m curious to see what targeted rehab will be and how she responds!
