Settling In......

 Babygirl's quarantine finally ended 2 days ago.  She is looking forward to a trip to the Farmer's Market today, even though it is bitterly cold outside! I'm looking forward to moving around a bit outside the house myself.  We haven't seen the inside of anywhere that wasn't a hospital, an office or the dialysis center in nearly a full month.

We never know, until we look back a little, when the watershed days happen.  April 28, 2011: Everything is fine. April 29, 2011? Nothing will ever be the same. December 30, 2021: That viral whatever seems a bit worse. December 31, 2021? She might not make it through the next 2 days.

In both cases, I was oblivious.  The first time, understandably so.  This last time? I should have been on it sooner.  In my defense, she wasn't the only one of my kids who was sick at the time. Curlygirl had gotten Covid the week before, and she was struggling with the illness. Her anxiety, always triggered to the max by any new physical challenge, had turned her into a 24-hour-a-day text factory, and I hadn't had a full nights' sleep in over a week already by the time Babygirl went down. I was working every day, exhausted every evening, and I couldn't see clearly how little Babygirl was doing at home. I didn't think to ASK if she was managing her medications.

I. Missed. It.

Forgiving myself for having human limitations is completely...

I can't find a word for it.  Ridiculous. Impossible. Nauseating. 

Noticing 5 days earlier might have prevented the entire debacle. Noticing ONE day earlier would have given them time to start the process of aggressively fighting the rejection. Of course, that would have left her WIDE OPEN to the Covid infection, so...

CS Lewis, in the Voyage of the Dawn Treader, reveals a singular truth. Lucy engages a spell to see what others really think of her (when she is, in fact, supposed to be doing something entirely different). She hears a friend (rather peer-pressured) into saying something unkind about her, and then realizes that she can never UN-hear it. Aslan gently confronts her about it: 

″‘Oh dear,’ said Lucy. ‘Have I spoiled everything? Do you mean we would have gone on being friends if it hadn’t been for this – and been really great friends – all our lives perhaps – and now we never shall.’ ‘Child,’ said Aslan, ‘did I not explain to you once before that no one is ever told what would have happened?‘”

I guess that is all I have, right now. The 'what-ifs' vs the 'what-is'? I will have to learn to let it go. Accept the unintended consequences and Let. It. Go.

DeeDee

PS Reminder to everybody: I'm healing. I'm fragile. I've been telling people, "If you are nice to me I'll cry, so don't be nice." It's how I roll. LOL

Grateful For Home....

 It's been a long week. Babygirl is still potentially contagious for another 4 days, so we are in home quarantine.

Babygirl is stable. She's done dialysis three times at the local center. She needs to arrive at 5:15 AM and stays 4 hours.  I can take her in and go to work in my office a couple of blocks away, but she needs transportation home. We are working on getting Medicaid to cover that, as we have one functioning vehicle right now.  Monday, with the snow, there was no ride home to be had, so she walked to my office, and I fit a quick run home in between patients.  Snowstorms tend to decrease the number of patients we see, so it wasn't a problem. Wednesday and Friday she got Uber rides for about $10 each.  That is clearly not sustainable on her budget, so I hope the paperwork for free rides goes through soon.

Dialysis is going pretty well. She struggles with ongoing nausea and other unpleasant GI symptoms. Dialysis makes people feel very cold, as they remove your blood, clean it, and put it back in several degrees cooler than body temperature, so the patient has to re-warm their own blood, as it were.

There is some excellent news, though.  Babygirl was extremely gratified to learn that the dialysis chairs resemble movie-theater recliners and are HEATED.  She's allowed to bring in a blanket, so we've used my sister-in-law's thoughtful Amazon Gift Card Christmas gift to order an electric throw blanket and some more comfortable scoop-neck t-shirts and zip hoodies. These will allow easier access to her port, with less chilly clothing shifts. She already owns an impressive collection of fuzzy socks.

Curlygirl continues her own struggle with some severe long-Covid symptoms.  I pulled an all-nighter with her in the ED yesterday, arriving home at 4 AM, which was the time I had to get up YESTERDAY to get her sister to dialysis. I fit a full day of work in between. I am too damned old for 24-hour shifts.

A few people have asked me how I'm doing.  My answer? I'm fragile. It doesn't take much to make me cry. I've advised people not to be too nice to me, as that triggers some breakdown in my control LOL. Sobbing at work is slightly less bad than crying in front of whichever kid is suffering at the moment, but not as good as crying in the car or the shower. 

This TV commercial nailed it: SickKidsVsMomStrong

DeeDee

PS: To answer the two current questions: No, the kidney is not expected to recover. We sacrificed the potential for recovery of the kidney to prevent her death by Covid. So, although Covid did not directly damage the kidney, it was ALL the nails in the coffin. 

No, she isn't on a list. We haven't even managed to schedule a hospital follow up visit with the transplant team yet.

Free At Last, Free At Last, Thank God Almighty.....

 Both of us slept like the dead last night. Well, Babygirl did.  If the dead get leg cramps from too much driving and sitting, and need to walk it out while waiting for the meds to kick in, well, then, me too. 

I also don't think the dead need to sleep with masks on, but that's just a detail.  Babygirl is still in quarantine. 

At the time of her discharge last night, I spoke with the social worker.  She told me that they were going to send medications to Strong Pharmacy, in house, so she'd have what she needs for the night and morning.  I asked if things had changed, med-wise, and she said that they had increased the doses of two of her regular medications and decreased the other. No problem, I told her. I brought her medications from home and we had plenty to cover the changes. Could she make sure that refills went to the local pharmacy? Absolutely not a problem, she reassured me. 

I waited for Babygirl for over an hour in the hospital lobby.  They assured me on my arrival that they just had to do some paperwork. When I realized that dozens of people were arriving for shift change at 7 PM I asked security to check on things.  "Oh, her nurse is bringing her down now!" I checked with Babygirl. "That's news to me!" And in a couple of moments:  "I'm in a wheelchair."

The nurse who brought her down told me I needed to go to the hospital pharmacy.  I told her I had discussed this with the social worker, and we were fine. 

At breakfast this morning Babygirl and I discussed this. I'd gone over her discharge medication list and discovered some discrepancies. Two NEW medications were added in that we didn't have prescriptions for. Perhaps we needed to go to the hospital pharmacy after all. We looked online for the pharmacy and it was listed as closed until Monday. OOOPPPPSSSSS.

I called our local pharmacy to see if her medications had been phoned to them, as requested. Nope. 

Well, then.

We opted to hit the road and work on the problem from the car.  It was, well, an adventure in frustration.

We started by calling the social worker assigned to us.  She's off until Tuesday. We tried the social worker I'd spoken to last night. "Leave a message."  I did not. We tried the main social work office number give for "urgent issues." It rang 30 times with no answer or machine, and we gave up. 

Next we tried the floor she was discharged from.  "Who is your case coordinator?"  WTDuck, heck if I know. I'm pretty sure that sometime while Babygirl was in the ICU more-or-less unconscious, SOMEONE introduced themself by that title. But I was stressed, and meeting 72 new caregivers/day, and.... I can't remember.  The clerk on the floor could not glean this information from her chart, so she instead tried to find a provider on the floor who had cared for Babygirl.  The consensus was:  She's not here anymore, so this isn't our problem/responsibility because she wasn't/isn't under our care. "Did you know that the hospital pharmacy is open 24/7?" Well, no, since that's not what it says online. They suggested we come back and pick up the medications. Well, by this time we are 40 miles down the road, so, NO. 

I'm a doctor. Many times I cared for people I had never met simply because I was on call.  This would have been a no-brainer.  I see the list of things she needs, and I just need to send them to a new pharmacy?  Awesome, easiest problem I've seen all night! But.....no.

She suggested that we call the transplant clinic, where she has been seen in person twice since 2019. And if that doesn't work, try the family practice doc (who has no access to her records here at Strong, so good luck to you).

I'd like to mention here that I am driving 70 MPH on a lightly snowy day in modest traffic while ALL of these conversations are happening.  By this time we've made it from Rochester to Syracuse.

We call the clinic on-call doctor.  The answering service has a 20 minute hold time, but the jazz Muzac is pretty awesome.  The operator is appropriately appalled at our story, so that was something.  She gave us the name of the doctor who would be calling back "within 15 minutes, or call me back."

Forty-five minutes later I'm placing bets with Babygirl that this doctor is going to listen to me pee and flush at the rest stop. We manage to do what we need to do without eavesdroppers. We get back in the car, hit 70, and initiate another call to the answering service.

Ten minutes into our new "on hold" session with the service, we get a call from a 607 area code. Strong is 585, so I'm not sure.....but Babygirl has faith, and puts the service on hold (I mean, fair is fair, right?) and takes the call. 

Dr A lets us know that it is "no problem at all" to call ALL of the medications she was supposed to get at discharge to the correct pharmacy.  See? The on-call doctor is GRATEFUL for such an easy request. At this point, we are less than 10 miles from home on a 2 1/2 hour journey. 

Two hours after our arrival home I called our pharmacy because I hadn't gotten the "You Have Meds" text from them.  Five new medications are ready. I picked them up for about $6. The 6th will be handled by dialysis on Monday. 

We (and by "we" I mean Babygirl) made a lovely spaghetti dinner, after (me) paying bills and (Babygirl) sorting pills. 

I've had about half a bottle of wine.  I'm not sure it's enough.

DeeDee

PS Oh, and one of the cars needed a jump to start. And apparently NO ONE has a functioning air machine to deal with the "your tires are low" warning on the other car. Duck it. Or drown the Ducker in wine.

About the When.....

 Thank all of you for your concern for Babygirl, and for your prayers.

Here is the answer to the question I've been asked several times in the last 24 hours:  When, exactly, is she coming home?

Here are the answers I've gotten from Babygirl, the Transplant Team Coordinator, and the nurses and doctors on the floor.

She is going to have dialysis Thursday and Friday and she can be discharged after dialysis. We will try to get her into an early morning slot Friday because you have to drive so far.

If she can't get dialysis on those 2 days, we will discharge her Friday, and she can come back Saturday as an outpatient.

(She did not have dialysis Thursday. Someone forgot to order it.  Incidentally, her sodium levels are quite low so they restricted her fluid intake, which, if she had a WORKING kidney would cause sodium retention.  It didn't work, oddly. Her sodium level is the same this morning as it was yesterday.)

As of 9:20 AM today, she has not been sent to the 9 AM dialysis slot.  Instead, she is getting a transfusion, which has not yet been started. She has been told she will get dialysis later. Certainly, she will have to have it again tomorrow if what they said earlier is true, but I haven't been told.

So she will be home either today (unlikely), tomorrow, whenever someone fixes whatever craniorectal impaction seems to be going on, or possibly the 12th of Never.

To be fair, her level of anemia needs fixing, and low sodium can be dangerous.  I haven't had anyone tell me what they think of her overall stability for discharge.

In other words, though, I am doing my best to let y'all know what I know. And right now that is, apparently, nothing. 

DeeDee

PS You also should know that I go to bed about 8:30, and I'm up at 4:30. I'm going to start answering all y'all when I get up LOL.

Homecoming......

 Babygirl got the news yesterday that she'll be released either Friday or Saturday, depending on how she does with yesterday's dialysis, and availability of a slot for her on Friday vs Saturday. I've been told we'll know tonight.  

We finally have the answer to how long she needs to quarantine for Covid.  It's 20 days.  Since her immune system doesn't work, it takes transplant patients longer to clear the virus, and some shed live virus for quite a while (in other words, they remain contagious longer than other people). So although she is coming home, she has to wear a mask outside of her bedroom. We need to wear masks. We can't sit and eat dinner together.

Dialysis has been set up locally (BGH for those who know local LOL).  Her first appointment/treatment is this Monday at 5:15 AM.  She has to go MWF. I could have opted for TuThSat, but that would have been in the late afternoon, and she deserves to keep her Saturdays open for hiking, shopping, and things we do together. 

I'm not sure how this impacts things like beach week. Baby steps. 

Geordi laDog is home after her staycation with our HERO Lynne.  She was extremely excited to see her "pack" but clearly was looking for Babygirl. Oh, yeah, Babygirl has a puppy, 11 months old, Bassett Hound. She's a bit of a much, so she went on vacation so Hubby could manage the other 3 dogs without her, erm, input. Bassetts have OPINIONS. 

So I don't know if I'm working tomorrow or traveling. Given Saturday's grimly cold weather prediction, tomorrow would be the better option. Not that my opinion is at all relevant here. LOL.

DeeDee

Helplessness......

Babygirl got her port installed yesterday.  She was on the schedule for morning, but bumped back to afternoon, so....no food or drink for, you guessed it, 15 hours, with, again, no IV fluid.  After the port was placed, she was transported directly to dialysis, where they gave her water at least.  She did not return to her room until about 6.  Dinner, as we know, arrives at 7:30. Thankfully, the nurses gave her something when she returned from dialysis.

I called the floor again at lunchtime to ask why I hadn't gotten an update in the morning as promised.  They, of course, had no explanation, but assured me that someone would call. I told them that I really didn't want to bother them unnecessarily, so how long should I wait to expect the call?  About 2 hours.

Three hours later, my phone lit up with a Rochester area code, and I found myself talking with yet another social worker. She was calling to confirm what schedule would be best for outpatient dialysis: MWF at 5:45 AM, or TThSat at 3 PM? Well.

God bless the social workers.  I unloaded ALL of my frustrations on her.  Picking a schedule for after discharge is great, but HOW THE HELL LONG IS SHE IN QUARANTINE?? Why haven't the doctors given me an update since Saturday morning? Why, when asked, did they not call last night? This morning? This afternoon?  WHY can no one talk to me sensibly about why Babygirl's kidney is going without water for what feels like days at a time?

You have to give this woman credit.  She called with the solution to a problem we didn't need solved at the moment and then had to work on ME. 

She agreed that communication should be better. She put in a page to the covering provider and put some urgency on it. She gave me the number of patient relations so I could file a complaint if I felt it was warranted.  She told me to call her in an hour if I didn't have a return call from the provider.

Mind you, I was working remotely at the time. The call came in between patient visits, but definitely impacted my schedule some. 

The nurse practitioner on duty called me shortly after I hung up with the social worker. She wasn't a "listener." Basically, at this point, my concerns about Babygirl's discomfort and the risk to the kidney for the last 5 days didn't concern her because Babygirl was "on her way down" to have the port installed, and then she would get dialysis. 

I asked her about Babygirl's quarantine. She. Had. No. Answer.  

I pointed out that we cannot reasonably solve the problem of when to schedule Babygirl's outpatient dialysis if we have no idea how long she will be an INPATIENT. Who do I need to ask to get an answer to what should be a matter of protocol, 2 years into this pandemic?

She said she would ask the Infectious Disease specialist to put that information in their next note. I've been asking this question for 5 days already, and you can't make a call and get back to me? Oh, okay. Not like I need to let my office know what actual days I'll be working next week. Or the next. I have quite literally been told by various people: 5 days, 7 days, 10 days, 14 days, and 20 days. I'm pretty sure we can cross off 5 days, since we are on day 5 while I'm chatting with her. 

Babygirl's roommate is a transplant patient who contracted Covid the same day that Babygirl did. She's told Babygirl that she's on a 10 day quarantine. So who knows, really.

My brother and sister-in-law have been sending me entertaining music (This Is Sh*t, for example) and memes. They've been doing the same for Babygirl. As my sister-in-law succinctly put it, "I've never felt so helpless in my life. We do what we can."

I couldn't agree more.

DeeDee

PS Keep annoying her with fun stuff. She doesn't have the energy to reply to everybody but she is entertained.

Let's Water the Kidney, Shall We....

 Or let's NOT water the kidney.

To recap: 

Friday Babygirl was not permitted to eat or drink after midnight because they wanted to get her permanent dialysis port in, despite having been freshly diagnosed with Covid. They figured out that there wasn't room on the radiology schedule sometime after lunch, so say, 15 hours with no liquid to the kidney and no food to the kid.

Saturday she was also NPO after midnight because there was still an order in to remove her temporary dialysis catheter (which by the way they CANNOT do until the permanent one is in place and healed well enough to use).  This was figured out about....15 hours in, with  no fluids at all for the kidney. And no food for the kid.

Sunday she got to eat and drink, and she sent me a picture at about 10 PM of her "stockpile" of ice water that she was working to shove down before they took it away at midnight, because....

Today she was NPO, once again, as they thought they'd be able to "fit her in" to the radiology schedule, but there were "more urgent cases" that bumped her off the list.  This time she had to wait until about 6 PM (18 HOURS with no food or drink) to find out she was cancelled, again. And again, no IV fluid to hold her over.  No IV fluid to give this struggling, nearly dead kidney one last chance at survival. 

I called the nurses' station.  I was as polite as I could be as I pointed out the unnecessary suffering they are causing for Babygirl. But I think I got a little loud when I said, "I know the chances for saving this kidney are like a snowball's chance in hell, but you all could at least PRETEND to try!"  She could hear me crying, I'm sure.  She said they had ordered Babygirl's dinner, but I was there every day for over a week and I can tell you that THAT is going to take until 7:30 - another hour and a half of waiting for her. I calmed down some and asked her please to take her something NOW - apple juice, a frozen ice, some crackers? It was clearly a request that surprised her, but also something that she was enthusiastic about: "I'm going to go hunting!"

She also told me she'd have the doctor call me.  That was 3 hours ago. I'm not hopeful. I'm not sure I have the energy to call again.

Babygirl reported fairly quickly that she had fluids, and later was completely excited to have a cheeseburger. This is the kid who has sworn off red meat for over a year.  I guess if you get hungry enough.... LOL. 

This is what happens when there is no on-site advocate for the patient.  When I asked her how she was doing, she said, "Yeah, it was rough today."

She's been told her procedure is scheduled for "tomorrow morning." Oh. Dear. God. 

DeeDee

No News is No News.....

 Yesterday I made it home with no difficulty or bad weather. It's extremely good that I did not plan on returning today, since the ice slick on the roads is so spectacular this morning. 

Babygirl is more-or-less stable. She had 2 hours of dialysis on Friday, and was supposed to get 3 hours on Saturday, but she tells me, "There was no room for me there." I don't know if that is because someone else in a more desperate situation bumped her out of line, or if her Covid-positive status makes it harder to safely place her there.  Or what.

She has no idea whether she is getting dialysis today.  But they gave her breakfast, so she's excited about that.  Yesterday morning they left her NPO (nothing by mouth) until I contacted her doctor to ask why? The procedure she was supposed to have on Friday is delayed (again, Covid vs availability?), but they failed to discontinue to NPO because the second procedure (to remove her existing temporary catheter) remained on the books.  Ugh.  

So two mornings in a row she wasn't allowed to eat or drink, while simultaneously being encouraged to keep the kidney hydrated.  On neither day did they put her on IV fluids to bridge the gap. 

I kinda miss the ICU....

Her labs are stable except I think she's going to need another transfusion. If she drops a pint of blood every time she has dialysis, this is not going to be an easy fix. 

Neither Babygirl nor I have any idea if she is getting any specific treatment for the Covid, ie antivirals. I do know that they have given her what they can for the rejection. 

What I find absolutely fascinating is that NOT ONE PERSON can tell me how long it will be before I am allowed to see her. "Five days. No, wait, this is a transplant floor, we'll have to check."

Duck. So we are literally able to take only one day at a time. One text at a time. One photo at a time.

Her breakfast looked pretty awesome.

DeeDee 

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?

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