Week 5

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Birthday, Week 1 of Rehab. We had great days, and not so great days. Live 1 day at a time, and focus on the trends.
Birthday, Week 1 of Rehab. We had great days, and not so great days. But you TRY to just live each day at a time, and focus on the trends. I got to see my wife today, and she was better than yesterday. Except on those days that she isn't. Then you remember that she's better today, than she was last week at this time.
ℹ️ Info          
Created: 2023-03-13 

2023-03-18 to 03-25 - M's Birthday and Rehab.

  • The fifth week begins kicks off with her Birthday, and the first week of Rehab. She is making progress -- but not happy with all of it. They said work. And it is. There's pain, but she is getting more self sufficient and some progress. But much slower than you want. Good days and bad.

Journal[edit | edit source]

Day 29[edit source]

           Main article: 2023 Heart Attack/Day 29
2023-03-18 (Saturday) - Rehab Day-2; Happy Birthday! PT/OT, Lots of visitors, and some sight improement.
  • Summary
  1. Melissa's birthday!
  2. She did an excellent physical therapy day, ocuputation therapy (brushing hair, teeth, getting in/out of bed/wheelchair). Ate with a fork but has problems seeing to stab, but can feed herself. Got to use the big girl potty. She worked it, well.
  3. Visitors included: Richard and Vickie, Diane, Theressa and her daughters -- and of course her Mom (Mary), Devon and me.
  4. We called or were called by Cousin Alexis, Brother Devon's Family, Lisa, Debi, Bill (Dad), Aunt Betsy. Her brother Mark and Robin sent a video message, her other brother left a text messages, as did many other friends, and I read her many cards and texts.
  5. She got a Birthday Cake, Flowers, she's been out of the "gown" since rehab, and wearing home clothes (sweats).
  6. Vision improvements: she was able to see the TV a little bit (though I think it gave her a little nausea after a while). But she was starting to be able to see people across the room. She has good peripheral vision for motion. The biggest quirk is things look far away and small. But I keep pointing out to her that it comes and goes, and seems to be getting a little better.

Day 30[edit source]

           Main article: 2023 Heart Attack/Day 30
2023-03-19 (Sunday) - Post Birthday Standing, Mandy visit, clothes and iPad upgrade pending.
  1. Post birthday! My brother went home to his family, but it was a good visit for everyone.
  2. She was standing in rehab, they keep working her on transfers (how to move from bed to chair and back), and making her sit upright more.
  3. They got her out of diapers and using the bedpan (or toilet), depending on her energy. She mocks that as "rediculous" that an adult considers using the toilet as accomplishment -- but it is.
  4. Her vision seems to be getting better. She wanted her flowers where she can "see" them, and a picture Theresa left (with them running) she was pointing out some of the other people in the photos. Which is new, that's only an 10x14 or so, with like 5 sub-pictures in it. The vision comes and goes, so isn't 100% of the time (and it seems she's using her peripheral vision more than her primary); but the ratio of how often she can see, how far, and how much detail, all seems to be improving. This is a good sign. When it plataues, we might want to deal with a neuro-opthamologist -- but for now, it's just waiting to see how much comes back on its own (pun intended).
  5. I brought her more street clothes (e.g. sweatpants instead of normal tights/workout pants) and T-shirts. She cared a lot that they matched so I opted for two colors that even I couldn't screw up -- shades of Pink and shades of Grey (far less than 50).
  6. I suggested that I turn on accessibility on her iPad, so she can work it with touch/speech gestures and do things like listen to books on tape, and so on. She was happy with that when I bring it to her next.
  7. Mandy came, and Mary and I bowed out. Both for the break, and also so they can get into turbo-gab mode, without outside interference.
On the Accessibility Stuff:
  1. I wasn't sure if I was going to get a negative reaction as that brings up vision impairment, but she was very excited about the quality of life improvements. I'd actually mentioned it in passing once before (that I could make it more accessible), but I think it got lost in the noise, or just people don't know that accessibility often means "disability friendly", as in vision impaired.
  2. She didn't know an iPad or iPhone had these modes, and was surprised when I was telling her how important iPhones/iPads had become to low vision people. (Sort of weird that a slicks screen with no tactile feedback, and an almost completely vision based interface, would be so important to the vision impaired. But i knew that). And I didn't know she didn't know about that, so was kind of waiting for her to ask.
  3. Since one of my tasks at Adobe has been as a program manager for Accessibility (and have championed many improvements over the years), I know a bit about it, but I am curious what she thought I did when I talked about that aspect of my job, or if she was just turned on spousal-mute-mode whenever I talked about it. (The Peanuts teacher, "Wa wa waaah wah").
  4. Ironically, while I managed bugs and features for it (and worked with the site limited folks a lot), since I'm not vision impaired, I generally looked at it (pun intended) from a bug-fix point of view, and not often as a user.

Day 31[edit source]

           Main article: 2023 Heart Attack/Day 31
2023-03-20 (Monday) - Tougher day; sight regression, exhaustion, pain.
  1. I got there and Melissa was distraught that she couldn't see, "everything is black" (except for one bright spotlight) and she wanted us to darken the room (so we did). Then complained she couldn't even see shadows and colors. Then a bit later, I put my face right up to hers, and she said, "Oh, hello". And later commented on the nurses teal colored top. So it seems to come and go, and when it goes, she loses it. I don't know if it's blood sugar, fatigue, or just neural overload -- but it seems to come back. (And we've had this scare before a couple other times).
  2. Melissa had done great with speech therapy (they'd already seen progress). And Melissa had done PT earlier in the day, but had been exhausted. But she was also having a high pain day -- all over. Floating between can't get comfortable and just wailing about the pain. Mary took a break, and I just kept trying different things. Melissa was like a toddler that was so tired they couldn't rest. I was having a tough time as my normal technique of find the pain and rub it out, wasn't working. (Touching her was hurting). Then they came back for the 1:30 pm PT, and started talking her through different positions. And getting her on the other side (she'd wanted to lay on her right), but getting her to lay on her left, pull her right leg over, and stretch out the hip/butt, that helped, and she got better. Went down, and did a little PT, before they took her off for a cat scan and ophthalmology.
  3. Because Melissa had complained about sudden loss of vision, they took her off for a cat scan to make sure there was no additional stroke or brain bleed. I wasn't really worried, this felt more like chemical/tired than any stroke symptoms. But they have liability based protocols (defensive medicine) so they made sure, and she was fine. (According to the test). No tPA (brain-draino) required, which is good.
  4. And Ophthalmology called about her vision. They didn't seem to understand how much it was coming and going. (They always thought she was at her worst). So they were actually encouraged by how good it was when it was working. They also recommended me to UH or UT's outpatient stuff when she got out of there; basically rehab for vision -- once they got her to where she could walk and be physically independent.
  5. Melissa isn't normally a huge fan of Panda Express, so I brought her some. She loved it. I figured that with bland hospital food, some fried rice and noodles would go over well. (Along with many packets of flavor like soy/plumb sauce/etc. -- anything that could hack the hospital food into "edible"). Hubby scored!
  • Defensive medicine isn't all good. In fact, an abundance of caution slowed the process way down -- like getting the vent out, likely resulted in much more infirm immobility and longer vocal and overall recovery. At least one cardiologist thought that the angiogram to check on the heart, might have been what scraped off plaque and caused the stroke. And a lot of the protocols that kept her down and immobile and off foods until thoroughly signed off on, likely meant longer recovery/rehab and is costing her today. They will sacrifice the recovery speed of 99 patients, if it prevents 1 accidental death lawsuit -- and I'm not sure most patients sign up for that. But I'm also not ready to challenge the protocols that had a positive outcome.
  • So this CT scan was likely unneeded, and increased her exposure to radiation (or other complications) by some small amount. But they have a better safe than sorry attitude. I'm not sure that all of these are playing to Melissa's advantage -- and she's an outlier. Younger, healthier, and might have bounced back quicker, if she had been on a faster track. But it's hard to say, and they have developed these protocols based on a lot more evidence than I have. So kinda have to defer a bit. They play the odds -- but that also plays to the middle of bell curves. And Melissa is an outlier. But I don't have the balls to take risks with her, even if it meant an easier recovery later.
  • Reading is always got too many black holes. When I was dealing with Stroke Pain, as Melissa is crying -- it took me into dark places. People that never recover from it and have it for their entire lives, and stuff like that. The same wiht a lot of the vision stuff; you can't read something that implies some percent never recover and not start going down rabbit holes. Then there was all the other stuff I caught by listening in, that I had to force myself to ignore. (The Watchman device she was on, was only 90% effective -- but she likely threw a clot anyways, and there was still more there. Or that she had DVTs in both arms. Or various blood chemistry flags that could imply bad things). So I veer away from in-depth reading and try to have faith. And I can't start diving too deep into the studies and questioning doctors on overly defensive medicine, because it requires me knowing way more than I can handle knowing at the moment.

Day 32[edit source]

           Main article: 2023 Heart Attack/Day 32
2023-03-21 (Tuesday) - Better day. Lethargy, Starvation Diet, but still putting in the work.
  • Summary
  1. Melissa is a bit lethargic, but putting in the work. (3+ hours a day). I blame the food/calories for some of it (but sure the pain meds, muscle relaxers, and other drug cocktails aren't helping). 4 days of Vegetarian Lasagna (the only thing on the menu that's vegetarian?) means she doesn't eat much... then she doesn't have energy. She's hard enough to get to eat when she's not getting hospital food. I told them "She eats some non-veg items like Chicken Soup, or French Onion soup"... so yesterday they brought her meatloaf (the food, not the singer). WTF!
  2. I did some shopping for M, I just got her spices and sauces to help flavor her food. While she won't give me many orders, she did request a bowl from Chipotle. I'll try to get some calories in the girl, she's looking a little prison-camp survivor.
  3. Today I got her Falafel from our favorite Greek place (to bring in tomorrow). When they asked where my wife was, and I told them -- they said the care package was on them. In the meantime my neighbors are meal-training me incredible BBQ, and Fajitas, and so on. I'm stuffed. If you aren't in a Hospital in Texas, they'll feed the crap outta you (or into you). In the meantime, they've been giving Melissa colon-blow because she hasn't pooped in a week. They did a scan and she doesn't have enough in her to worry (not realy that corked up), but when that stuff finally takes effect, I'm thinking a scene out of Dumb and Dumber or Hall Pass is coming.
  4. A week ago, she was just getting her Pacemaker replaced and could barely sit up. Now her talking/memory is improved, she's brushing her own hair/teeth, using the big girl potty, in Sweats/PJs/Home Clothes, feeding herself, at least finger foods (forks are harder when you can't see, but she can hit the target once loaded).
  5. I called UH has a Low Vision center to help people with reduced vision (often due to stroke/accident/etc). They used to work with the Rehab's in area, but stopped under COVID and I guess it's impossible to get two bureaucrats to agree on anything that increases their liability... so it'll now have to happen AFTER Rehab. They have lots of tools and techniques (light magnifying devices, prisms, etc), but we'll have to get a referral from her Ophthalmologist. And they won't give that, until she can go into their office on her own. (The equipment is too big to bring to the patient). Trapped in the ministry of silly walks. But we'll get there, and I think we need to see how far her vision gets first. In the meantime, I describe pictures to her -- like of her Nieces wedding reception.

Day 33[edit source]

           Main article: 2023 Heart Attack/Day 33
2023-03-22 (Wednesday) - Setback. Back to CCU. Drove in a Husband, drove home a widower with a broken heart.
🗒️ Note:
It is with sincerest apologies that I might break it this way to people who don't know. Mary and I tried to call many people and relay the message more personally. But writing is my catharsis and outlet. And a lot of people I might not get to, will read this.
  • Summary They called me at 4:00am. Melissa was having trouble breathing, was lethargic, and an X-ray showed that she might have a blockage (megacolon), and her white blood cell count was spiking. They were sending her from Rehab back to CCU (Walter 10-22). I drove down and now we wait. Poor girl is back on the vent (what she hates), and a bit of a restart.
The worst day of my life
At 11:52pm the love of my life died. What happened is that her entire colon was blocked up, and it was causing septic shock. They stabilized her but it was too late for anything but removing her colon. I don't care about my wife having a bag, but it's not about me, it's about her (and her wishes). She was "done" weeks ago. She wanted her life back -- and this latest setback robbed her of the last hope. We had done a DNR (Do Not Resuscitate) for a reason, and this was it. She fought as long as she could. The choice was make her suffer, and (a) the best case would end up torturing her with a life she couldn't stand (blind, neuropathic pain, her hobbies of running, cooking, dominoes, organizing, or most of the things she loved were gone)... or (b) there was the far more likely path was torturing her poor little body with more trauma before she would still eventually pass due to complications from not being ambilatory. (You can't heal if you can't move, and she wasn't yet mobile, and gutting her was going make it worse). With the help of family, I chose to follow her wishes, let her suffering end, and let my partner of 32 years go back to God.
  1. If they removed her colon, it's 2-3 weeks recovery for a healthy person. Even then you have rough prognosis, and lots of complications if you can't move around. She wasn't yet close to walking on her own. She had many more weeks of recovery from the stroke/heart attack, and this easily doubled that (if miracles happened). And she was out of miracles.
  2. To give you the full sense of scale:
    • she had DVTs (Clots) in both arms, and one lingering on her heart. If the arm ones threw, it was a pulmonary embolism. If the heart one dislodged, it was a massive stroke.
    • she was legally blind, but there was a chance that some vision could come back, and we could use some assistive devices and training to help. But she was distraught about that. I was hoping we could get her past that and a quality of life that satisfied her. But it's not up to me, it's up to her. (She would lose it about not being able to see).
    • she had horrible neuropathic pain ("make it stop"), which we weren't sure if it was permanent. Exercise and stretching contracting muscles/tendons can help, but she didn't yet have the strength to do what it took to end it. If ever. And I was terrified as this doesn't go away for some stroke/anoxia victims. A life of her on drugs for pain, was terrifying me for her.
    • Now you throw on top her having her colon removed (she was already severely malnourished, and needed that for healing) -- and the recovery/complications. I couldn't keep torturing her just to keep her around. I had great conversations with her Cousin (Julie) who was a Nurse, and we talked through outcomes with the doctors. They got and respected our decision.
    • Evem if I could deal with all of those things, it was never up to me, it was up to her. She was on a vent -- but we'd had these conversations before, and put it in writing. My Step-Dad died of sepsis, and it was my Brother and I that had to make the decision for end of life. Now my wife. It seems my purpose in life is to kill the people I love. Though, I take strength in the fact that I was following their wishes, and putting their needs above my own. (There's a black hole in my life).
    • The little fighter, fought to the end. We gave her pain meds and let her rest. Still, for 7 hours she survived with her pacemaker turned off, in sepsis, running 40/22 blood pressure, a 46 heart rate, and still getting her Oxygen Saturation into the 90s. She fought her whole life, and beat all the odds, except this one. (We all lose this one in the end). She wasn't supposed to live to see 5 weeks when she was born (most kids with her birth defect died in infancy), and she made it 55 years. They told her to take it easy on her heart, so she became a flight attendant and ran half a dozen half marathons. Telling Melissa "no" was always a dare.
  • What if? I'd talked to Mary and pondered, what if Melissa had just died on February 18th, when she went down. Melissa wouldn't have had to deal with all those challenges. But then she wouldn't have gotten to say "hi" and "goodbye" too all her friends that visited. Melissa wouldn't have gotten to prove what a tough little fighter and odds defier she was. Mary wouldn't have gotten to be a Mom to her baby girl for the last month of her life. And I would have had 33 fewer days with her. They weren't all good days, but I cherish every one (and the 11,680 others that we were together).
  • Story of us There's a little thing I'd been working (slowly). Some sampling of photos of things we'd done over the years. It's nowhere near complete... but hints at the beautiful zest for life and being that was my wife. One of the greatest gifts we got was EARLY in our marriage (still newlyweds), we had to go through open heart surgery. (Replacing her double-bypass). It gave us perspective on what was really important. I might be a dick, but I was there for her whenever she needed me. She might annoy me, but I was always lucky to have time with her.


🔗 More

2023 Heart Attack
Feb 18th Melissa had a heart attack, stroke, and had to have CPR for over an hour.

Tags: 2023 Heart Attack/Weeks

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