Conflicting Disease States....

 So here we are. 

Babygirl was definitively NOT Covid positive on arrival to the hospital.  She is Covid positive now.  So this is how this falls out:

Her kidney rejection is T-cell mediated (the same cells that are murdered by HIV/AIDS, and the same ones that remember you've already had chicken pox so you don't typically have to fight it twice). In plain English, her T-cells have noticed that the kidney doesn't belong to her and needs to die. Her T-cells are succeeding. If not stopped, the kidney WILL probably die.

On the flip side, her T-cells are the most effective line of defense against her Covid infection.  She needs them to function, to remember her immunizations, and to fight.

So anything they give her to fight rejection will accelerate what is currently a mild Covid infection, which in her state of immune compromise and overall poor health at the moment, could prove devastating.  

Since she can do dialysis for the kidney failure, and they can't fix Covid if it runs amok, they are treating the Covid and letting the kidney fend for itself for the most part. They acknowledge what little they can do to support the kidney is likely to fail.

To answer the question already asked by a few: Again, no, we can't "put her on a list." She has to complete this illness, and see if there is any remaining kidney function. As a look-ahead, they are already checking out local long-term dialysis availability in our neighborhood. If it is determined that the kidney will not recover, we can talk "lists."

I will be leaving for home tomorrow morning. I can't visit her, and under the circumstances, need Covid testing of my own, which has already been scheduled. I will return at ANY time if needed, and when they allow me back in to see her. 

I dropped some things off for her today, and they were angry that I was "walking the halls" when I have such personal risk.  Sorry. Babygirl NEEDS those headphones.

DeeDee

PS And pretty please, y'all, before you ask a question, think about whether or not you'd want to hear it if your kid was desperately ill.  The worst so far is a record-breaking, "Is she a DNR?" Please be gentle with my sorely bruised soul.

As Crazy as it Gets......

 Today got off to a promising start. Babygirl woke up feeling well, with a good appetite.  I had already planned on doing some laundry and getting a pedicure (mission accomplished on both counts) and then walking to the hospital (also accomplished).

We spent the day catching up on Citygirl's TV series, loading Disney + into her phone, and just generally killing time.

The transplant doctor said she could have her Foley catheter removed, and much rejoicing followed. Six days with a tube up your hoo-hah is no fun, for sure.

The biopsy results came in: Acute on Chronic rejection.  This is not fabulous news, and no one really has any idea what tripped the trigger on this, since a month ago it appeared to be functioning just fine. 

So a plan was outlined:  High dose IV steroids tonight, followed by antibodies of some flavor (hey! not my specialty.  I don't always need to know exactly WHAT they are doing as long as I am confident that they know WHY), additional dialysis (to clear toxins and get rid of excessive fluid), and plasmapheresis (to remove the antibodies against the kidney). 

In order to accomplish all of this, they need an IV for tonight (since the last 2 placed at Lourdes both failed within minutes of each other), and they are going to place a port under her skin that will allow for dialysis, plasmapheresis, blood draws, and routine IV access.

Except that absolutely NO ONE can get an IV into her.  Not the nurses, not the IV techs, not using heat, not using ultrasound. So....no steroids tonight. One more day to let the kidney function decline.

But they did the blood and Covid testing needed for the surgical procedure and got her on the schedule for tomorrow.

We get results on the MyChart app as they appear, frequently before the doctor sees them.  One popped up in the late afternoon.  "Hey, congratulations! You aren't pregnant!"  We laughed a while about that one.

Then about 7 PM, another popped up.  "Hey, it's the Covid test!"

Positive. Positive?

It was MotherDucking positive. It's at least the third test she's had since she's been here.  The others were all negative, as was a test 5 days before she was admitted. 

We stayed very quiet, recognizing pretty quickly that once the doctors noticed, I'd be thrown out and would likely not be allowed to return.  And since her roommate had a kidney transplant TWO DAYS ago, we were pretty sure there would be some pandemonium.

It took about 15 minutes, and a nurse came and quietly closed the door.  Within another 5, the nurses returned with a cheerful story about how they were rearranging rooms, and they had a BETTER room for Babygirl's roomie across the hall!  Isn't that nice?

I'm pretty sure once this woman realizes that all of a sudden everybody was gowned and shielded to the gills, she will have....concerns.

I hung out for as long as I could, but at 8 PM the nurses could really no longer pretend I wasn't there, so I had to leave, which was gut-wrenching for both of us. She has let me know that they moved her to another room, with another Covid positive transplant patient.  

They aren't sure whether or not they'll be able to the procedure tomorrow. 

And that's all I have. I'm going to bed.

DeeDee

PS But my toes look and feel amazing.....

It's Been an Oddly Lazy Productive Day.....

 I had been planning on walking the 1.8 miles from my new hotel to the hospital this morning, with a stop at an Enormous Barnes and Nobles on the way, the excuse being that Babygirl's power cord was acting wonky and I figured they'd have one.

Her "call me as soon as you wake up" text made me skip those plans and get on the road more expeditiously. 

I arrived at the hospital and texted her and told her I was going to eat my breakfast sandwich in the cafeteria so I wouldn't be eating in front of her (she hates when we do that. She is still annoyed that we ate in front of her before the transplant 10 years ago LOL).  I climbed to the 4th floor (that's as far as I can make it without needing oxygen) and was waiting for the elevator to take me up the last 3 floors when she texted, "They are going to take me before you get here!" Fortunately for me the elevator doors opened right then or I'd have died trying to sprint up those last 60 stairs (there are 20/floor. I, as always, counted).

I made it too her room to discover that they were, indeed, "taking her." However, it wasn't for the biopsy. It was an echocardiogram, which neither of us had heard anything about.  She left without protest, and I went to sit in her room for an hour.  

The rest of the morning was spent with various doctors doing rounds and each explaining their perspective on the mysteries.

Infectious Disease is signing off. She gets a couple more days of antibiotics and then done. They are of the opinion that infection had nothing whatsoever to do with the rapid onset of kidney failure.  The abscess, while intriguing, was a red herring. I agree.

Transplant Team agrees as well. They need the biopsy at this point to see if they can pinpoint the "why" of what is happening.

Nephrology Team agrees.  We are down to the last test that will tell us whether this is an acute rejection episode due to a couple of days of vomiting and viral symptoms (during which Babygirl could neither take nor keep down her antirejection medications for an unknown number of days), or if there is another disease state (like Lupus) causing the problem. The ANA test for Lupus has been repeated and is unchanged, off-the-charts abnormal.

We had some down time, so we played rummy (genius idea that Hubby threw in some cards when he was updating the emergency supplies!). A video chat with Citygirl helped pass the time as well.

While we were waiting, the dressing on the abscess site was changed. It's looking fine, healing well.

While we were waiting, her nasogastric tube was removed. She was quite surprised by how long it was. And it was gross.

While we were waiting, she was taken off the cardiac monitors.

While we were waiting, she got her hair washed (praise be to God! She still had a little eu de emesis going there) and had a sponge bath.  The sum total of all of this is a very happy patient. 

They finally came to get her for the biopsy at 1:30. She was gone for more than 2 hours.  I had a book with me, but I couldn't concentrate on it, so I played solitaire and checked social media.

She had to lay flat for 4 hours after the biopsy, so I stayed until she could sit up and eat. 

I finally got dinner at about 8 PM.  And security never found me. 

DeeDee

PS We might not get biopsy results until Friday. And then they need to treat what they find.  Creatinine is over 8.

The Not Unexpected Test....

 Babygirl just called me and told me that the test of the day will be a kidney biopsy.  It has not been scheduled for a specific time, so I'm going to go do what I do best: Get a visitors' pass and avoid security for the rest of the day.

I'll eat breakfast first. I'd already had a long, hot bath before she called.  Lunch is packed.

To answer some obvious questions:

No, they don't think she has cancer, and cancer has nothing whatsoever to do with this type of biopsy.

Yes, they are looking to see if they can (finally) figure out WHY what the hell happened.

DeeDee

Picking Away at the Mysteries....

 Lab results keep rolling in.  The important current ones measure kidney function and acid/base balance.  The kidney function remains poor (at least on paper), creatinine at just over 7, a steady, gentle, ugly rise. The acid/base balance is very good, and she is producing adequate urine, so the function that the kidney DOES have is, well, functional? It is doing a good enough job to keep her off dialysis even though the numbers don't look fabulous.

That odd ANA result (indicating possible autoimmune issues) has been followed up with more tests, all ordered by a doctor I've never heard of. (I checked google - she's a kidney specialist. By test type, I was thinking rheumatologist.)  There is evidence of significant inflammation.  I'm.....concerned. We still don't know WHY her kidney failed, but this may be part of it.

The nausea has stabilized on round-the-clock Zofran. She is eating a little (a VERY little) of each meal, and is taking fluids quite well. She had nausea as I was leaving tonight (7 hours into my 4 hour visit LOL), and got another dose of Haldol.  Yesterday that knocked her unconscious for the entire night, so I don't feel bad about leaving before I was asked.

She is finally out of the ICU and on the transplant floor. The fact that there IS a transplant floor makes me feel better. They clearly have a clue about how to take care of her. I am sure there are three people in the ED waiting for her ICU bed.  The stack-up of patients is horrible. 

But as to Babygirl herself? She is alert, cheerful, and very happy to have her glasses and her phone. She's been busy catching up on all of the social media she missed. She asked me today if I was okay or if I needed to go to the hotel and rest.  In other words, she is herself. She was awake the entire time I was there, FAR longer than at any one period of time since she arrived. 

It's much easier to keep Karen in check when Babygirl is better.

DeeDee

The Little Things Can Flip You......

 Morning lab update:  Creatinine is rising, up from a nadir of 4 to nearly 7.  I haven't spoken to the doctors, but this is a bad thing. Everything else is stable.

The rest of this post is all about me.

So, for those of you who are fortunate enough to never have had to suddenly uproot to a far-away city in a health emergency with less than 10 minutes to decide what you need to survive on the other end:

I grabbed 3 days' worth of clothes plus a couple extra panties and bras.  I forgot socks for myself but grabbed 3 pair for Babygirl, so I've been wearing her teeny tiny socks on my gigantic feet. It's worked. I grabbed 6 days' worth of medication for me, but no emergency stuff like Tylenol or headache medications.

I forgot toothpaste, and, as noted, my socks. Both problems temporarily solved LOL.

However, I just took day 4 of my medications with no end in sight here. And ALL of my clothes have been used, vomited on, or, well, lived in. I am currently wearing Ana's orange protest T-shirt and a pair of jammie pants. 

None of this would be terribly problematic, but the hotel's laundry room is under construction until the 6th (which in construction lingo means "until the 12th of never").  They are using a send-out service, so before 8 AM yesterday, as per instructions, I delivered virtually ALL of my clothing to the front desk for cleaning.

"They'll be back tonight."  Except they weren't.  "They'll be back first thing in the morning." Except they aren't.

They said they'd send their shuttle for them, ETA 10 AM. Well, I'm not going anywhere, so I guess that will do.

I came back to my room and literally had the biggest breakdown I've had so far.  Like, this is the crisis my soul is going to say is one too many?  Well, the soul knows what it knows, and if you don't let the stress out, the next thing will take you DOWN, so advice: Cry when you feel it. Except in front of the kid.

So I had booked this room through today, initially having no idea how long I'd need to be here.  I told the desk (while I was dealing with the laundry thing) that I'd need to stay longer.  They gave me a number to call to clear it with the hospital, I thought, to authorize extending the discounted price.

They had me call, it turns out, because they could apparently see (despite the fact that I have been sitting down HARD on my inner Karen) that I was a grenade with the pin pulled. Handle with care.

The hospital housing coordinator told me that this hotel does not have room for me to stay, and I need to check out and move somewhere else.  They have a sort of Ronald McDonald house for adult patients in critical care, but it is also under construction at the moment, to be done, well, not in time to help me.  

She got me a reservation elsewhere, still with a hospital discount, no shuttle, and I can check in at 4.  Checkout here is at 10, but I'm not going ANYWHERE without clean clothes and a MotherDucking shower.  And somewhere between, I need to be at the hospital, timing a "legal" visitors pass to the arrival of my friend who is bringing Ana's glasses, phone, and my ongoing medications (and socks. Gotta have socks!) sometime this afternoon. Good thing I took a moment for the breakdown.

In the middle of all of this I got a call from the hospital financial counselor.  We did our best to figure out which insurance to bill first.  I gave my best to give a crap about it. 

Karen might appear despite my best efforts.

DeeDee

PS Going off in search of my clothes. 

Riding the Wave (We Hope) Down......

 Today was relatively uneventful.  I'm grateful for that.

Current status: Babygirl remains off of dialysis, as she is producing adequate urine on her own (she had only one dose of the Lasix).  The kidney labs are stable-to-trending slightly worse with no dramatic changes. 

Labs that were done on the day of admission, but not resulted until today (either because they really do take that long, or because they are specialized and only get run during the week or get sent out): 

Cultures are finalizing. The abscess grew non-MRSA staph. This allowed them to stop the kidney-toxic vancomycin and switch to something less dangerous. Blood cultures have not been reported, but usually if they are positive that shows in the first couple of days. AFB stains are negative for TB.

All of the weird/common respiratory pathogens have been ruled out. Influenza A/B, Covid, pneumococcal pneumonia, Legionnaire's disease. Throat culture is negative.

Heart strain is resolving.

Blood sugars are higher than they should be but not enough to need insulin.  Her chart is still missing her Type II diabetes diagnosis. I discussed this with a resident tonight and they will get an A1c with her morning labs. I mean, they already checked her cholesterol.

The current unexplained outlier is a collection of tests for autoimmune diseases. All are negative except for her ANA, which is >2560 (if there is a  > symbol in front of your test results, it means that the level is so abnormal that further testing would not make the result any worse LOL). The disease most commonly associated with this test is Lupus, which to date had NEVER appeared on our list of concerns. But since Lupus is known to cause kidney failure, they ordered the test.

And the answer to your next question is, "I don't know." I suspect that a kidney biopsy could be in our future to see if that clarifies things, but, as always with Babygirl and specialty medicine, I am a bit out of my league here.

One ongoing problem for her is nausea. Now this is a kid who never has a belly ache, but she was complaining of constipation for a week or so before the insanity began. She is still having some issues with this, but the nausea only goes away for as long as the anti-emetics stay in her system. She apparently spent much of last night vomiting again.  They are converting her from as-needed Zofran to around-the-clock Zofran, and stopping Phenergan for breakthrough and giving her Haldol instead. That combination knocked her senseless, so I left before they threw me out, only 7 1/2 hours into my 4 hour visit. I am apparently invisible LOL.

They feel she is well enough to be managed on a regular floor, but she is one of 2 people in the ICU who could be transferred out if there were somewhere to transfer them TO. I'm not gonna lie - I am not at all sad to see her stay safely in the ICU.  If they transfer her out, they have to remove her arterial line, and right now that is where they are drawing all her labs from. It'll be all poking and prodding and "good luck with THAT" if we have to give up that line. She is getting labs done at least 4 times daily.

So I'm "home" in my cozy hotel room with a Chicken Tikka Masala fire pizza (I gotta say, if you can't make up your mind what you want, this is the THING. 

DeeDee

PS There's a salad, okay?