February 27, 2022

I was so tired, but if I had known this part of the adventure would all be over in two weeks… would that have changed anything? Would I have pushed myself more? Pushed back at the hospital staff more? Again, like I said the other day, I’ll always feel like I did everything I could have done. But what if there was more I could have done?

Somewhere over the rainbow, way up high
There’s a land that I heard of once in a lullaby
Somewhere over the rainbow, skies are blue
And the dreams that you dare to dream
Really do come true

Another rest day, another day with Nurse Nate the …. I don’t know, I need a word for Nate. He seems to hate his job. Or at least the parts of his job in which he has to interact with people. Which, you know, being a nurse…. :: side-eye :: Anyway.

Oh! I should update about yesterday afternoon first; the Doctor came in once an hour to physically check on Tim as well as just reading his records in his office. They took samples of every bodily fluid they could get to, to start growing cultures to see what his infection is coming from; that was actually about two days ago that they took the cultures, so some of the results are starting to come back. The GOOD NEWS is that his blood isn’t growing any cultures that would make us worry that either he has MRSA or that the Endocarditis wasn’t knocked out by the weeks of Vanc. However, the doctor really, really doesn’t like Tim’s kidney numbers. Like, his numbers, with both kidneys, are worse than mine, with one. Dude. IT’S NOT A COMPETITION. Also, DON’T MOVE IN ON MY KIDNEY TERRITORY, IT’S THE ONLY INTERESTING THING I’VE GOT GOING FOR ME! lol

So –

Yesterday, 12:50 P – True to his word, Delgado has been in every hour on the 45 minute mark. He just told me he’s going to try to track down the Nephrology team for a time they can come by.

2:00 P – Delgado just came in, and Tim’s lung goop is growing gram negative rods, so we are likely looking at pneumonia again, although not sure what strain yet.

Pneumonia. I hate you, pneumonia. I haaaaaaaaaaaaaate you.

Someday I’ll wish upon a star
And wake up where the clouds are far behind me
Where troubles melt like lemon drops
Away above the chimney tops
That’s where you’ll find me

3:15 P – OK, just spoke with the kidney Doctor. She says that Tim’s kidney numbers aren’t great (we knew that) but she doesn’t feel they’re bad enough to warrant dialysis (although I did have to give my permission if they do need to start it). Her suspicion is that Vanc can be hard on the kidneys, plus he had that small clot in one, so she would like to wait as sometimes the numbers will plateau, which is what she sees his numbers doing now. So hopefully his kidney numbers will get better over the next 24-48 hours. If not, then they will probably need to start dialysis.

And then I got here this morning about 10. The desk staff is getting to know me, and we’re at the stage where we are joking around with each other and being friendly. I think I might want to garner some good graces, and I might try to put together a basket of teas and hand lotions for the staff here. While so far three of the four nurses we’ve had have been… shall we say … sullen, the rest of the staff has been lovely. So it might be time to be a little nicer and giftier than I feel, in order to get some good karma. Is that manipulative? Don’t answer that.

There wasn’t a lot of room in that room, for me to decorate. I put up the two paintings Susan had done, with a couple of the Rubik’s Cubes in front of one of them, where he could see them. I don’t know if he ever really noticed, though. He never asked for the cubes.

Delgado just came in and talked with me. He said that Tim had not a great night but not a drama filled night, either. His blood pressure did get a little low at one point and they had to give him something for that, a drip that he’s still on. Other than that, we’re just watching and waiting. His kidney numbers seem to have peaked, maybe, or at least they’re not moving a lot (I have access to his MyChart data so as soon as they upload test results, I see them). Delgado agrees with yesterday’s kidney doctor in that hopefully if we just watch, testing every few hours, we will see a plateau and then a levelling out of his numbers, and we won’t have to move on to dialysis. I read up a lot on dialysis last night and it doesn’t seem like the life-long commitment that I thought it was – there are many, many studies done with people like Tim who only developed kidney issues after a huge medical event, who had to go on dialysis but it was enough to help the kidneys turn around and recover. Over months, granted, but still. Recovery can happen.

(Side Note – Delgado, unlike yesterday’s kidney doctor, wanted to hear everything about why I only have one kidney).

Somewhere over the rainbow
Bluebirds fly
Birds fly over the rainbow
Why, then, oh, why can’t I?

That’s about it for right now. I didn’t know, when I came in this morning, how long I might stay today – I had been leaving around 1 PM but yesterday stayed until almost 4 because I wanted to stick around and be Tim’s voice with doctors. I’ll play it by ear today but I might not have to stay that long today, knock on wood. Tim seems a little more alert today than he was yesterday. Not by much, but I am seeing his eyes open for maybe five minutes at a time, instead of about two minutes. And he wanted to watch the news today, instead of yesterday’s all-day marathon of some Texas game warden show. They seem to give a lot of tickets for undersized fish, and people who shoot deer at the wrong time of year. Also, Delgado was happy with Tim’s assessments, saying that he’s moving his limbs on command, and following movement with his eyes.

All that neatly piled stuff? I did that. Every day when I would come in, the little table there would be empty, and stuff would be piled up in my chair. No rhyme or reason, just random stuff thrown into the chair. I would do my best to sort it and make piles, folding stuff, putting things like sheets away in the broken drawers that were in the wall closet. Why? Why did I do it? I wanted somewhere to sit. I wanted Tim to have a neat room, even if he wasn’t really aware of what was going on. Why did they just throw things around? I have no idea. I know I’ve said this a lot, but everyone there just seemed so tired, so ground down. I suppose maybe they had ceased to… I don’t know. Ceased to care about the details?

In other news…? There is no other news, at the moment. I didn’t watch the last two episodes of All of Us Are Dead last night, I opted instead for just game shows, or whatever was on, and I actually sat in the other room near the Catio, and just sort of had TV on in the background for sound while I petted the cats and played stupid Match 3 games on my phone. As I told a friend the other day, if I can’t do something in the day that fills my cup (like making some art), I can at least guard the last few drops that are in my cup, and keep them from spilling over, so that I can refill with quiet and sleep, and be able to pour from my cup tomorrow.

I also told a couple friends that I feel so non-feminist right now, in that I could not pass the Bechdel-Wallace test to save my life. If you’re not familiar with the Bechdel-Wallace test, it’s a way to grade books/movies – Are there two women, who talk to each other, about something other than a man? Even if I’m talking to another woman these days, chances are 99.99999999% I’m talking about Tim.

It seems like when Tim has a great day, I have a good day. When Tim has a bad day, I have a devastating day. That’s so unfair. Why can’t I give him a good day by me having a good day???? Anyway. He’s getting 100% of my energy this weekend, so not a whole lot else is going on for me. I’m just trying to eat, sleep, and shower, and conserve my energy for being here and being his warrior.

xoxo y’all

If happy little bluebirds fly
Beyond the rainbow
Why, oh, why can’t I?

Lyrics by Arlen Harold
Over the Rainbow