December 29, 2021

December 29, 2021

This? This was a bad day. I mean, they were all bad days, it’s just that some days were less bad that most days. This was not one of those. There were a lot of tears in this day. A lot of them.

Well, I know, I miss more than hit
With a face that was launched to sink
And I seldom feel
the bright relief
It’s been the worst day since yesterday

PART THE FIRST
Here’s what I put on Facebook, early in the day.

For those worried about whether or not I’m eating well during this – homemade Chex Mix, and salad and carrot cake from Satchel’s ❤️
Edited to add: Actually, after that big meal, I kind of need a nap myself!

Tim has been napping most of the time I’ve been here today. Lots of doctors in, and I’m both encouraged because we’re starting to get some answers but discouraged because it might mean a few more days here at Club Shands, and weeks of home health IV crapola when we are set free.

BUT! Nobody tell Tim this, ok, I’ve been keeping this a secret for a few days but I can’t stand it any more — he just thinks his sister Jenny is coming down to stay with us for a week… but she’s actually also bring his parents, Bill and Linda. I can not wait to see them, and I keep warning them that I’m gonna make it deeply fuckin’ weird with the crying and the hugging. They should be here this evening.

AND Y’ALL, the land line in the room has rung a couple of times, and I almost don’t know what to do with it. It looks like one of those big plastic things we thought phones from the future would look like in the mid 80s. It’s got a cord attached to the wall and everything, I almost couldn’t even figure out which button to press to answer it the first time it rang!

PART THE SECOND
My notes from this day are A MESS, y’all. This is what I was writing to family. First up we have the notes I was writing to myself as the doctors were talking to me.

mass on mitral valve
probably a vegetation from bacteria
endocarditis
surgeon
antibiotics wont clear it, needs to be removed before antibiotics will clear it
based on size they will remove or not
six weeks of antibiotics
iv
took off heparin because of risk of bleeding if he needs surgery
Results of TEE will say surgery yes or no
Could be – emergency surgery or
small surgery, six weeks on antibiotics or
six weeks on antibiotics and a TEE recheck and he’s fine or
six weeks on antibiotics and a recheck and need surgery

Troponin is a type of protein found in the muscles of your heart. Troponin isn’t normally found in the blood. When heart muscles become damaged, troponin is sent into the bloodstream. As heart damage increases, greater amounts of troponin are released in the blood.

heart hole is 1 mm

I really liked these boards in the rooms. It gave you a quick glance of who was there, what the plan was for the day, how to reach whomever.

If there’s one thing I have said
Is that the dreams I once had
now lay in bed
As the four winds blow my wits through the door
It’s been the worst day since yesterday

Then this is what I wrote to family, out of that jumble of notes above.

OK, here we go. We have the results of the TEE, and because of that, they are switching gears in what their focus is. They did find a mass on his mitral valve, most likely vegetation from bacteria. This means that Tim has Endocarditis.

From Doctor Google: Endocarditis usually occurs when germs from elsewhere in the body travel through the blood and attach to damaged areas of the heart. People with damaged or artificial heart valves or other heart conditions are most at risk. Symptoms vary based on the severity of the infection, but may include fevers, chills, and fatigue. The main treatment is antibiotics. Sometimes surgery is needed.

This does all line up with what Tim was undergoing before he had those first two small strokes; on Monday the 13th, he came home early from work with chills so bad he almost looked like he was having one of those fake TV seizures. Once we got him warmed up, about an hour later, he started going back and forth for days with having a fever between 98-100.2, being cold, being too hot, and being fatigued a lot. Seriously, y’all, those chills he had were WILD. If it were anyone else but Tim I would have thought they were faking trying to have a seizure. But it is Tim, so he insisted he was fine. Sigh.

SO. They’ve taken him off the Heparin, because depending on what the surgeon says about the size of the mass, they feel the blood thinning rom the Heparin is more of a risk to surgery than it is helping to thin the blood to combat future strokes. If the mass is over x-big, they will want to do surgery to remove it. If it’s under x-big, they feel they can knock it back with heavy duty antibiotics — this is what the Infectious Disease doctor was telling me last night; that he may have to be on IV antibiotics at home for up to six weeks (she said four, the guy who just came in said six). Yesterday the doctor told me I could do it, but this guy said they may call in home health to come out once a day for it. He doesn’t yet know if this is going to mean that Tim can’t go to work, that will depend on if he has surgery or not. He may be able to work at home, but just not go in to the office (which is fine with me; I know he’ll feel better, working, and I’ll feel better with him under my eyeballs). Whatever we have to do to make that happen, to get better internet at home, I’ll work on that.

OK, junior surgeon lady just came in, the main surgeon is in surgery right now so he can’t make the call until he’s done. She says that depending on what the surgeon says when he looks at the result of the TEE Tim just had, there could be a variety of things that happen. I’ll get into those in a second. Meanwhile, this is sort of a chicken-and-egg situation. The Endocarditis could have caused the stroke, or it could just be he randomly had a stroke and hey, what the hell, Endocarditis? BUT! Small vegetative masses like the one they found can throw off little spits and bits, and the strokes could very well have come from that, in the early stages of the Endocarditis. They don’t know and they don’t even really feel that it matters, what matters is to heal the heart ASAP.

Here are some things that need to happen:
The cultures they took two days ago need to finish growing, so they know what type of bacteria it is.
Once the cultures grow, and they know what it is, they will know what antibiotic to use.
They need to start growing the cultures they just took, to see if he is already responding to the antibiotic he is on.
They will attack the mass with the right antibiotics.

After that there are four ways this could go. From WORST to BEST we have:
1. They could do a big emergency surgery in the next 24-48 hours. It would be considered “emergency” more because he has been on Heparin for a few days and so in addition to the open-heart surgery they would need a Neuro team in there to watch his brain for any bleeding (instead of the clot strokes he’s already had).
2. They could do a small (but still considered open-heart) in the next 24-48 hours, and then put him on a six week round of at-home IV antibiotics.
3. They could put him on six weeks of at-home IV antibiotics, do another TEE, and then do surgery if the size of the mass has not reduced.
4. They could put him on six weeks of at-home IV antibiotics, do another TEE, and then throw a big party if the antibiotics completely dissolve the mass.

This is a lot to process. A lot. Hopefully I took good notes while everyone was in here, and everything is relatively clear, but let me know if you have ANY questions.

Then I have a brief note to myself as everything was falling apart that day –

Another stroke at 3:58

Fallin’ down to you, sweet ground
Where the flowers they bloom
Well, it’s there I’ll be found

Hurry back to me, my wild Colleen
It’s been the worst day since yesterday

It was crowded in the room all day, people coming and going, info coming and going… I had time to eat, but Tim had not. I had brought us a salad from Satchel’s. He was in bed, sitting up, and I asked him if he was hungry. He said he was, so I turned around to get the salad, and when I turned back – literally seconds – he was drooling a lot. He looked both a little embarrassed and also like he wanted to make a joke about how hungry he was, but he didn’t say anything. Just started looking around for something to wipe the drool up with. I handed him Kleenex after Kleenex, and after going through about four of them without looking like he was slowing down, I asked if he was ok. He didn’t say anything, just nodded. I asked if his head hurt, or if he was feeling weird at all. He shook his head. One thing that I had repeatedly been telling him ever since the trip to North Florida, was that nothing – no physical ailment at all – was too small to tell me about. I wouldn’t tease him about anything and I wouldn’t tell him that anything was nothing. That I wanted to know every little twinge, every little ache, and that the only trouble he’d get in, the only time I’d yell at him or chide him, was if he didn’t tell me something.

So here he was, indicating nothing was wrong, but not saying anything, and still continuing to drool. I didn’t know what to do. He didn’t looked panicked, and I didn’t want to panic him if everything was OK, so… I told him I’d be right back and I walked down to the nurses station to ask if Terri was there. She wasn’t, but the person on duty there (there were about twelve work stations, maybe eight of them had people at them, including the person at the front desk) asked if there was anything they could help with. I told them that my husband was acting weird, that no lights or bells or anything were going off in the room, but he was just… weird. Eight people stood up at once and started to file down to our room, and as the first one got in, she called “Stroke Alert” and the last person heading down there just leaned over as she was walking and pulled a machine out of a hole in the wall and brought it down. Everyone was very calm and collected.

When I got in the room they were already unhooking him from everything and I can’t remember if they called transport or what, but other people started showing up. They said he was definitely having another stroke, a pretty big one, and I just stood off to the side as they unhooked him and hauled him down for another CT or MRI or whatever it was.

I held it together enough but started crying after he left. Someone stayed with me – I don’t even know who she was or why she was there. I remember she was an EMT becasue she was wearing the ShandsCair uniform, but I don’t remember why she was there. Maybe they’d been dropping someone else off and tried to help? Anyway, she kind of just let me talk and cry, and somehow in all that I started telling her how his parents were on the way, and should be here in another five or six hours, so I hoped he didn’t have any majorly bad turns before then… if he could just hold on until they got there….? But then I started crying again because I already knew we only had one person left on the visitor list, and I already knew I was going to have to choose between his parents, but now I was going to have to choose between his parents with visible proof that he was still having strokes, was getting worse? What if the worst was about to happen? How could I tell one parent they could come in and not the other? And his sister? And tomorrow, his brother? Y’all. I just could not stop crying.

Transport brought him back up – was it transport? Or people from another floor? We were going to move him back to the Neuro ICU, the place we’d started. They’d moved us down to … either 4th or 5th floor, sort of a more general ICU, but now it was back to Neuro. But first they had to do a bunch of things – a lot of stuff at hospitals, I’ve learned, is hurry up and wait. “Get ready, we’re moving you to another floor! Get ready right now!” and then they don’t move you for half an hour.

So the nurses started asking (nicely) why I was crying. I guess they wanted to make sure I knew that Tim was in the best location, having a stroke in the hospital is really the best place to have one, he was going to be well-taken care of… all of which I knew… but I couldn’t stop crying about having to choose between his parents. And then that other family was coming, and I knew they wouldn’t be allowed in, and I just felt terrible, but also, that I didn’t want the nurses to think I was complaining, because the family coming were first responders, or health care professionals themselves, and I knew they’d understand about the Covid visitor policy but I still just felt so terrible and I was beating myself up for letting Suzi in a day (two days?) ago and fucking up that last spot.

They got me talking, I guessed to distract me, and asked me questions about what Tim’s family did in health care… and they also whispered among themselves for a bit (I thought they were talking about Tim, or maybe a different patient I wasn’t supposed to be hearing about, so I tried not to listen). I was finally calming down.

Then, one of them announced that she’d entered everything into the computer about guests, and that Tim’s mom would be let in as the fourth person, and his father (retired fireman), brother (paramedic), and his sister (occupational therapist) were not considered guests since they worked in the field and would be allowed in as they were professionals.

Y’all.

I started crying again. And hugging everyone in the room.

Then it was time to move him.

PART THE THIRD
This is what I put on Facebook, late that night.

And… we’re back where we started.

First up, what I didn’t want to get into this afternoon, only because everything was happening so fast, and it was so busy, I wanted to wait until I had more answers. Then shit went sideways. We are OK. Things definitely aren’t great, and to be honest, I’m … if I weren’t too exhausted for feelings, I might be scared. But all I have room for is moving forward one step at a time.

OK, here we go. We have the results of the TEE, and because of that, they are switching gears in what their focus is. They did find a mass on his mitral valve, most likely vegetation from bacteria. This means that Tim has Endocarditis.

From Doctor Google: Endocarditis usually occurs when germs from elsewhere in the body travel through the blood and attach to damaged areas of the heart. People with damaged or artificial heart valves or other heart conditions are most at risk. Symptoms vary based on the severity of the infection, but may include fevers, chills, and fatigue. The main treatment is antibiotics. Sometimes surgery is needed.

They’ve taken him off the Heparin, because depending on what the surgeon says about the size of the mass, they feel the blood thinning from the Heparin is more of a risk to surgery than it is helping to thin the blood to combat future strokes. If the mass is over x-big, they will want to do surgery to remove it. If it’s under x-big, they feel they can knock it back with heavy duty antibiotics — this is what the Infectious Disease doctor was telling me last night; that he may have to be on IV antibiotics at home for up to six weeks.

There are a lot of things I’m not going to get into, just because it’s this chicken-and-egg scenario of we can’t do this one thing until this other thing is settled, but we can’t settle that until this other thing is answered, and so on. But we have a plan now, at least, even though the plan looks like a plate of spaghetti.
Then things started to calm down enough that he was cleared to eat after being no food/no water after the TEE, and they took a dinner order, but they wouldn’t bring it for another hour or so and OUR BOY WAS HUNGRY.

Fortunately, I had Satchel’s salad.

But then, rather than eat it, he had another stroke right in front of me.

Though these wounds have seen no wars
Except for the scars I have ignored
And this endless crutch, well, it’s never enough
It’s been the worst day since yesterday

They can’t do another tPA, because of the heparin. They can’t do the through-the-groin surgery again because the clots are juuuuust out of reach. So they’re pumping him full of fluids to keep him moist inside, and giving him medicine to raise his blood pressure in the hopes that he can shoot the tiny clots out himself. If not, we’ll talk surgery, but that’s really a last resort.

He has good strength on right, moderate on left, which is a great improvement over the last five hours. His speech at first was very impacted, however, he was able to pick up his phone in both hands, and text me some complete sentences. So the words are there, they were just… trapped. His speech has improved a lot in the last hour, he’s now understandable, if very slurred. His mind is fine, though, and he can move all four limbs although he’s a little weaker on the left. He’s even trying to make jokes! They’ve moved us back to the Neuro ICU, where we were after his emergency surgery on Friday.

His sister Jenny and his parents are probably two hours away, or less, and his sister Amy dropped everything and started driving down as soon as she could; she’s out in the waiting room (they’ll let anyone in the waiting room, but only so many people in his room during his entire stay, which has been some drama in itself as this keeps growing into a longer stay). And his brother Billy is flying in tomorrow. Thanks to… I don’t know, begging? tears? prayers? bribery? both of his parents will be allowed in, and I can’t express how grateful I am for that because the stress of having to choose between them, choose which one could come in and see him and which one would have to sit outside the doors, waiting… that was almost killing me.

I’m okay, y’all. Protecting someone, saving someone’s life, is apparently my love language? Who knew. And a lot of the nurses and doctors were giving me hugs after we got him stabilized, so I knew I wasn’t alone. And his family is within reach, and I know that as soon as they get here, if one of them can stay with him overnight, I can step back, go home, cry, sob, sleep.

I have never been so bone weary but felt so supported and loved at the same time.

Hell says hello, well, it’s time I should go
To pastures green, that I’ve yet to see
Hurry back to me, my wild Colleen
It’s been the worst day since yesterday

Lyrics by Flogging Molly
The Worst Day Since Yesterday

And that’s really all I have to say about this day.

xoxo y’all

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