Day 13

Bad night (for me). She's not happy, but getting better. Had the MRI, and progress on inpatient therapy. I had a bad night, and rough morning (was fixated on her vision). She's not happy (Neuropathy pain + 1 track mind), but she's getting better. My fears lessened when she didn't like the doctor standing in front of the window (too bright), and I made progress on inpatient therapy (getting her in TIRR in Memorial Hermann). Another MRI became another CT, with nothing new. ℹ️ Info           ~ Aristotle Sabouni Created: 2023-02-28

2023-03-02 (Thurs) - Neuropathy, MRI, Bright Light, and Memorial Hermann TIRR.

• Sight

1. Melissa had early talked about things being out of focus. Meh. Her brain took a hit, I wasn't worried.
2. Then she talked with her eyes closed; fine, her brain wants to block out visual noise.
3. Then she said she couldn't see anything, and it was black. I lost my shit. When she found out she had minor glaucoma (mostly in one eye) she was terrified of losing her sight. And it's so important to everything she does. So my brain was circling the dark places (why her, etc). Today the opthamologist came, and I'll read the report tomorrow. But the fact that she squinted and thought it was too bright when he stood in front of the window, was a good sign to me. So hopefully can sleep tonight. (I'm way too raw after so many days of not knowing if she even existed any more).
4. I chatted with the Speech Pathologist (who used to work at TIRR) and she said sight coming and going is not uncommon (even day-to-day). And permanent loss can happen, but that this isn't THAT abnormal, got me back to where my head was initially; that the brain is healing things, and vision takes a lot of resources (processing), and we stand a good chance of it getting better.

Melissa is not a fan of Neuropathy pain

1. It's quite common for people with TBI's (Traumatic Brain Injuries) to be repetitive and only fixate on one thing. She is not atypical. "Make it stop", "It hurts", "Why won't you make it stop?". Are on auto-repeat.
2. They can only give her Tylenol because any of the narcotic pain killers could alter perception and brain healing(?). Guessing on the last part, but they said they won't. And they aren't cutting it.
3. This stuff sucks, and it's horrible being a helpless spouse (or Mom) that can't do anything about burning pain... but it's starting to become normal, and it is a part of the healing process. Most grow past this.
4. Late in the day (after 8 hours of her mantra) they put on some lidocaine cream on her feet, and she got releif, and immediately stopped and went to sleep (some peace). So we'll see if that's going to work tomorrow -- and we get more interaction. She can be quite conversational, when there's not something to consume her.

When Melissa was asked how much it hurts, she blurted "8". Which shows that it's not a 10, but also is probably a little over-inflated because her mind in this state can't distract itself or think of anything else. I got her to chuckle a couple of times, while repeating her mantra. Like I said, "was that the 301st time? We always ignore the first 300 requests, but 301 we'll respond to." She smiled a little, then went back to what she was repeating. Or the Speech Pathologist was doing a swallow test, and was feeding her AppleSauce to test her strength, and she was like, "Gulp... Make it stop. Gulp... it hurts". So I take that as progress. She's speaking better/stronger. And she's looking healthier. She's able to eat puree's. So these are improvements. See victory in the baby steps and trends.

• CT Scan They did another CT scan -- but like the last two, she passed just fine (Negative).

MRI

They finally took her away for the MRI again. As she was leaving for the MRI, she cracked me up by changing her mantra a little, "I'm a good person, why won't you make this pain stop?" I had to laugh a little and said to her parting gurney, "Yes, you are a good person baby. This will get better and stop over time". They keep thinking she's responsive and vocal enough. Then they get her down there, and I guess abort it because they aren't confident enough in her willingness to convey heart pain or remain still. (Risk mitigation over patient outcome?)

I had prodded the doctor earlier in the day, when he said they were thinking of doing the MRI, I replied, "I've heard that for 11 days". He replied, "But we mean it this time". They didn't. This is all bureaucracy that she has to be able to report if her pacemaker is heating up -- even though it is a model way more modern than ever had problems before. But radiology cares more about protecting radiology than patient outcomes. It's a bit annoying.

• Visitors The speech pathologist and I talked -- she'd worked at TIRR. Said that when Visitors come, to not overload her, and basically no more than 2 at a time. And generally try not to overload the processing by only one person coming forward and talking at a time. And basically, 10-20 minutes of high interaction, then give her a little recoup time. (Basically, understand that the brain fatigues quickly, and to not overwhelm it).

TIRR

1. They had been talking to me about finding the next place she will go; which will be an in-patient rehabilitation place for a brain injury (basically hypoxia or low oxygen for a long period of time).
2. Timeline is likely late next week, or the week after.
3. I had asked Sigrid and she suggested TIRR Memorial Hermann. So I'd applied for that -- did a tour today. And they called me and I talked with them about her case.
4. Basically it's looking positive. They point out quickly and often that they are #2 in the Country (and world?) on Rehabilitation (where Gabby Giffords was rehabilitated). So we're in process, and hopefully likely to be accepted.

They do have multiple locations -- and the one in the Medical Center is the least convenient, but probably a little higher than the other TIRR locations. I had applied initially to Woodlands location, just as it being more convenient and able to visit. Multiple people had said that Med Center TIRR gets a few more of the most extreme cases -- but that it doesn't sound like Melissa will be that extreme. And the disadvantage is shared rooms (and could be harder to get in). So Woodlands had single rooms, Melissa wouldn't do well with a screamer behind the curtain next to her. So it sounds like the better tradeoffs. I feel good that we've managed to get Melissa in one of the best Hospitals in the world, as well as one of the best rehabilitation facilities.

• House Cleaner (Adriana) We'd had a mix-up and she'd skipped coming the prior week. I explained telling Melissa she has a clean house is something that matters to her (after talking with Debi and what mattered to her Dad). So Adriana came to clean. Still revising the story to someone new, struck a nerve, especially as I was still freaking out about potential blindness. But she did a great job, doing things that we normally don't ask of her. (Like making my bed). I got that it was her way of trying to make my life easier.

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