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?

Assessing the Damage.....

 Babygirl is stable, improving slowly but steadily in general, but there are, as always, glitches. 

Her kidney numbers were steadily declining while on dialysis, which is, of course, the expected outcome but not at all helpful in deciding if the kidney itself is improving. When I arrived this afternoon, she was off dialysis, and they were giving her Lasix (water pills, only IV).  Now, critical care is not my area of expertise, but I couldn't puzzle out the why of those choices, entirely. (One of the unintended consequences of the Covid visitation restrictions is that family cannot attend morning rounds to hear what the doctors know/think.) But I have updated her MyChart and can see all of her labs.

So here is what I know: Everything kidney-related appears fairly normal except that she is still in kidney failure (Creatinine down to just under 4, still not good).  And for some reason, someone ordered a test that assess cardiac strain, a BNP, which was wildly elevated, so there IS significant strain. Lasix is used for both sluggish kidneys AND heart failure, so.... out of my league here.

I have not heard that there are any positive blood cultures, but final results on those can take days. No further word on the abscess germs either.  Antibiotics continue. 

Babygirl was up and drinking quite a bit of fluid. She had pancakes for breakfast, but ate nothing else for the remainder of the day due to ongoing nausea.  She continues to be photophobic (extremely light sensitive) with headaches off and on. This could be migraine, or.......I don't know what.

She was able to carry on conversations with me all afternoon while I diligently combed 52 billion tangles out of her hair (removing unspeakable horrors from the tangles as I went. Remember, she's been vomiting a lot and has had 2 fairly bloody procedures done!) But I noticed, as we talked, that almost nothing we discussed was "sticking." About the only thing she seemed to process was that Betty White had died (?), and the rest of everything was, well, circular. Like goldfish brain.

Given how ill she was just 40 hours ago, I can't say if this is going to be ongoing or if she'll get more cognitive improvement, but I'll vote for improvement on the "its too soon to be certain" side of the coin. 

On the lighter side, I went to my old friend Mark Ballard's church this morning.  It was the exact rest my brain and soul needed.  

AND as an additional bonus, Tony and Judy Hipes came up and took me for dinner.  I'm going to find that diner on Uber and order some Buffalo mac and cheese for dinner tomorrow LOL.

DeeDee

Scrubbing Off the Fear......

They enforced the visiting rules on me yesterday, sort of.  The charge nurse came in at about 2 PM and told me I would not be allowed to stay the night again, and that I would be limited to 4 consecutive hours visit/day from here out. Since visiting hours start at 8 AM, I was well over THAT limit already. But, she didn't specifically say I had to leave immediately, so.....I stayed until 8 PM.  After all, I haven't been given a visitor's badge with a time stamp since I got here, so who's gonna know I overstayed (except the charge nurse, who has clearly figured out that I am a serious asset to Babygirl's care and survival)?

I settled in the hotel room, ate some Uber Chinese and crashed.  I even forgot to turn on my phone ringer, but the hospital didn't call. I slept 9 hours, the first un-interrupted night since Curlygirl was diagnosed with Covid, before Christmas.

This morning I got up, made and drank ALL of the hotel room Keurig coffee, and took a long, hot shower. There wasn't an inch of me that didn't feel like it was covered in sweat and fear.  I scrubbed. A lot.  And cried, a little.  Okay, maybe more than a little. Bathrooms are for crying, right moms?

Babygirl has thus far survived a brush with death so close that another hours' delay in seeking care would likely have been the end of her. 

It could be a long road back.

Keep praying.

DeeDee

(Thankfully) Slow Day.....

 Since the completely overwhelming busyness of our morning, it has been slow-mo for the rest of the day.  Babygirl has been sleeping since the extubation (removal of the vent tube).  She's no longer sedated, but she is OUT, with the notable exception of a couple of bouts of vomiting that left me changing my clothes faster than I intended.

They will be enforcing visiting limitations (although, honestly, but that standard they should have thrown me out HOURS ago LOL), so once I leave tonight I will have to decide what 4 hours I want to spend with her tomorrow. That will be a tough one.

I had lost the password to her MyChart, and so I spent some of my quiet time today getting that reset.  I had the opportunity to go through her lab results for the past 2 days.  It was both terrifying (it was worse than I thought when we got here) and reassuring (it's better now than I thought it might be). Her creatinine is down by 2/3 of the original number, but she is still in serious kidney failure.

Apparently a common dialysis machine malfunction was responsible for some blood loss last night, adding to the "dilution factor" of rehydration, so that explains the steeper-than-expected drop in her hemoglobin that led to her transfusions.  They've been watching for the problem since, and are switching out the filters much sooner than typical to avoid a recurrence. 

Babygirl continues to make urine on her own at a reasonable level. She isn't really taking any food or fluids beyond the Ensure-like stuff they have going down her nose (which, by the way, smells worse than Alimentum baby formula when you barf it up). She needs to be able to drink and get out of bed sooner rather than later.

Fever is improving. Antibiotics have been on board, but they cannot penetrate to the center of an abscess. Bacteria-detecting slides of a specimen from the OUTSIDE of the abscess did not show any visible germs. Specimens from the INSIDE of that li'l ugly showed what will likely be confirmed to be staphylococcus on culture, but that will take a day or so. 

So that is where we are. They are drawing more blood right now (from an arterial line that monitors her blood pressure and allows for easy access without any poking). I don't expect much in terms of significant change, but we are creeping toward better.

DeeDee

PS Today was the SECOND time that someone tried speaking to her in Spanish when she didn't respond to English.  I mean, good on you for thinking of it, but incoherent works the same in every language as far as I can tell LOL.

Busy Morning.....

 So it's been, what, less than an hour since the last update, but we've been busy.

Her labs are much improved as to acid balance.  As the doctor pointed out, up was the only way to go in her situation. (Down would have finished her.)  They are not much improved as to kidney function.  Both the BUN (hydration vs kidney function) and Creatinine (kidney function overall) are barely improved at all really. Potassium is normal, but it wasn't very high to start with. In plain English, she is still in full-on kidney failure, and we still don't know why or whether it will improve.

At-the-bedside surgical incision and drainage of the abscess in her armpit has been done. It was thoroughly gross and obviously necessary. Cultures were done from deep inside this creature, but will take 1-5 days to finalize. 

She had a breathe-on-your own trial, and passed, so they just removed the endotracheal tube and she is OFF THE VENTILATOR.  (This was accomplished with NO fanfare but MUCH vomiting.) I can say with all honesty, that I came closer to catching vomit with my bare hands just now than I ever did with any toddler.

She has a headache since the extubation, and of course, a sore throat. But she can TALK, not just attempt communication. 

DeeDee

Making it Through the Night....

 All medical people will tell you that the majority of disasters seem to occur at night. If people are going to crash, it will be in the wee hours, as happened to Babygirl yesterday. So the overnight hours are generally more critical than the daylight ones, somehow.  There are biological reasons why this is so: Hormonally and immunologically we are at are weakest in the hours before the dawn.

That being said, last night was not disastrous. However, a few things need updating, so here we go.

Yesterday while we were here in the ER, the nurses were repositioning Babygirl.  I had stepped out of the room and was just coming back around the corner when I spotted blood in her armpit.  It was a right time/right place discovery. Given Babygirl's condition, no one might have noticed it for quite a while.

Nursing paused to clean it up (I suggested twice that they culture it, but....no.), and I continued to mention it to each successive provider.  One of them ordered an ultrasound of the area to see if it was a concern. That was not done until late last night, and I was fortunate enough to see it done.  In medical terms, there is a 2-3 cm loculated pocket of pus in her armpit (1 inch or more, with numerous separate pus pockets). A surgical resident was here this morning and he kept talking about the "incision" and that is "draining through the incision. It took a couple of tries to firmly explain that there was NO incision, and that he should LOOK at the ultrasound pictures.

They are doing a procedure later today to fully remove this, or at least get it to fully drain. 

I slept 3 times, about 3 hours each, so I am doing okay. But at the hour when I was completely OUT, the nurses woke me up to give consent for blood transfusions. So, good thing you let me stay, eh?

She is not actively bleeding that we can see. Her blood counts were low (hemoglobin 8.2) at Lourdes yesterday.  Last year she was at 11, much closer to normal.  But yesterday she was absolutely dehydrated, so adding a gallon or two of fluid further diluted the blood she has, so her hemoglobin dropped below 6. Since her blood pressure is also low (yes, it was HIGH yesterday!), transfusions were in order.  Hopefully it will make her feel warmer.

She began running a fever last night, and is still febrile. No one knows why.  The abscess, perhaps?

She is alert and feisty and her hand restraints have been removed. When I asked her yesterday if she had any skin lesions, she was too obtunded to answer. Today, she says that she knew there was a problem in her armpit, but she can't remember if it was there before the vomiting started.

Which moves us to the most encouraging part of it all.  She is sedated, but lightly.  I can talk to her and get answers, she can accurately complain of discomfort via a 20-questions sort of routine, and she wants to go home, preferably NOW.  But the fact that she is on continuous dialysis and a ventilator makes that, well, currently impossible.

DeeDee

Airlift vs Ambulance.....

 For those of you who don't already know, Babygirl was hospitalized in the wee hours this morning.  She had some vomiting for a day and a half, with cold symptoms.  Covid testing was negative (important since Curlygirl is actually recovering from Covid).  

Yesterday I noticed that Babygirl was breathing heavily. She used her inhaler and said she felt okay. She actually ate dinner with us last night for the first time in a couple of days. But by bedtime the heavy breathing seemed worse, and I was concerned that she might tire during the night.  I set an alarm to check on her periodically. At 3:30 AM, the breathing was the same but she was clearly confused. She said she was looking for her socks, but then didn't notice the ones right in front of her.  I asked if she wanted her glasses, and she put her hands on her bare face and said she was already wearing them. She was uncoordinated, and I had some trouble getting her down the stairs and dressed.  I told Hubby I was headed to the ER with her.

We got there by 4 AM and were SWARMED by healthcare workers. They had her roomed, with EKG, chest x-ray, and blood work all done withing 15 minutes of our arrival  She was so sick that there was always a nurse, sometimes three, in the room at all times. 

The blood work came back and showed acute kidney failure, with numbers worse than they ever were prior to her transplant.  For the medical among you, her blood pH was 7.01.  Normal is 7.4.  Less than 7 is quite often fatal. She was breathing heavily to try to blow away the excess acid. 

By 7:30 we were ready to load into an ambulance.  I joked with the doctor, since this is our second ambulance ride to a distant hospital, that she'll have to try harder next time so we can take a helicopter. He said he wanted LifeFlight but they were grounded due to fog.  

Well.....DuckItAll. DuckItAll to hell.  (My autocorrect politely has been using "duck."  I'll go with that.)

Current status: Intubated on a ventilator, sedated, on dialysis with a feeding tube in place. 

All this for a cold with a stomach bug.  People wonder why we are so careful.  THIS is why. Transplant patients are never completely safe.

To answer some common questions:

1) We know WHAT is wrong with her but we don't know WHY.

2) We don't know if the kidney will survive.  It may recover, it may not.  Initially we weren't terribly certain that Babygirl herself would survive, but that seems to be...better.

3) No, she doesn't get automatically put back on a transplant list.  We don't know if she needs it, and there is a process for that. 

4) No, it is still not Covid. 

I've been here all day.  And I've just been informed that I have to leave by 8 PM and, due to Covid-related safety guidelines I'm only allowed to spend 4 hours with her tomorrow, all at one time, and no additional visitors.  I've never not been with her in the hospital. Never.

DeeDee  

PS: My sincere gratitude to the Emergency Room Team at Lourdes Hospital in Binghamton, the Emergency room teams at Strong Memorial Hospital, and the ICU doctors and nurses who have provided Babygirl's amazing care up her.

PPS: And a big DuckYou to Covid for making it impossible for me to stay with Babygirl.