When Crises Become Normal.....

 Babygirl has been doing home dialysis since just after Thanksgiving.  She has had some assistance once in a while from the dialysis team but has been largely independent with it all.  However, a couple of weeks ago, she began having issues with her needles clotting before she could get the system hooked up. She'd have to take everything down and start over or wait until someone from the team could come and help her.  Sometimes the team COUDN'T help.  

Ultrasound of the fistula revealed some stenosis (narrowing) that was likely impacting blood flow, leading to increased clotting. She needed to have a fistulogram and probably some angioplasty.

The nurses notified the vascular surgeon. "We'll get back to you." And again. And rinse and repeat.

She was finally scheduled but not until January 18th.  For someone who is supposed to be doing dialysis at home four days a week, and was barely able to manage two, this was....unacceptable.

Her nurse finally advised her to contact the other vascular surgeon (the one who works for MY hospital LOL) to see if he had any availability. I think she told Babygirl's usual team that we were going to do that, because before I could make the call, she was given two days' notice that she was bumped up to yesterday.  

I rearranged my work schedule, and we went to the hospital as ordered at 11 AM.  No preop testing had been done because of the short notice, so we had to have the Covid test, the obligatory pregnancy test, and a check on her potassium (since kidney failure patients frequent run very high, which can be dangerous with the anesthesia) and the current status of her anemia.  Everything was within acceptable parameters, which we knew by about 1:30.  It was nearly 5 PM when they wheeled her off to the OR.  

FYI: I will NEVER, ever get used to seeing her go.

She apparently woke up during the procedure (when I told her about it, she said "I thought that was a DREAM!), so they gave her some extra juice. Recovery took a bit longer than expected.

We didn't get home until after 7, stopping to pick up a sub for her and some Chinese for me. 

She's fine. The procedure was a success, and dialysis today went well.

But here's the thing:  I never let anybody know that there WAS a thing.  I mean, usually I tell the family, let the prayer chain know, put up a blog post or a Facebook notification, something.  I didn't even tell her sisters.  I've reached the point where this is just another day in the life, which is absolutely the lowest estimation of my mental health that I can imagine.

So, to all the family and friends who faithfully pray for us, keep praying. I'm sorry.  I'll do better, I promise.

DeeDee 

One Is NEVER Enough.....

 Babygirl is recovering nicely from the RSV. No fever since before Thanksgiving. Cough is.... less vomit-inducing. Since she was out of danger (as much as she ever is), I went without her to Brooklyn Saturday to see Citygirl and her boo.  Sincerely excellent bonus:  I got to spend the day with my niece, who SHOULD inherit the Citygirl moniker LOL. 

I arrived in time for a breakfast run.  We had some time to kill before Saturday AM actually opens up in Brooklyn (11 AM for most non-food venues, but we found a used bookstore open at 10!).  We did books. We did an amazing salvage store.  We did another thrift store, and then we headed to our main event.

Shuffleboard.  

I confess that I have a friend in her 70's who plays and says it's fun.  I've never had the pleasure.

The business had a bar with drink specials and bar food.  The booths were set up to look like cabanas. There was flamingo wallpaper and a stage full of flamingoes (with a sign telling us not to DUCK with the flamingoes). And there were 10 or so shuffleboard courts? Lanes?  I DID learn that what I would have called "pucks" are actually called "biscuits."

I had two espresso martinis while playing my first round of games.  I had to switch to caffein-free and went with rum and pineapple. I am 100% sure that this improved my playing skills dramatically. (HEY! Let me remember it how I remember it. 

We went to Citygirl's "AirBNB" and had wine and pizza, and played a couple of rounds of Taco, Cat, Goat, Cheese, Pizza.  I did NOT win but I was also not injured, so......I call that even.

Sunday, I rode with  Citygirl to her Dad's place in Middletown and was treated to a lovely authentic Indian lunch. The drive from there to home was supposed to be about 1 hour 40 minutes.  About half an hour into the incessant rain, Google kept updating the length of my trip to, well, 1 hour 40 minutes.  I swear, I was 30 miles from home before whatever accident on I-81was upsetting Google before my arrival time began to look more promising. I got off early and took another route around the problem and was home 10 minutes later that originally guestimated by Google. 

So what, may you ask, besides espresso martinis and other day drinking delights, does one apparently always need more than one of?

Viruses. I awoke this morning with a cough and sore throat, and was winded in the time it took to get from bed to potty, about 15 feet.  I'm assuming it's RSV, I mean, massive exposure, right?  

I knew I would fail the Covid screen for work, and testing wouldn't be ready until tomorrow, so I'd miss more than a day of work if I didn't do something proactive. I went to the ED. Generally, 6 AM isn't too busy, right? Nah, we are in Flow Condition Red, and the leftover non-emergent crazy people are wandering around, yelling, complaining and generally making the few people remaining in the waiting area either entertained or uncomfortable, depending on viewpoint. 

Eek.  I did get triaged promptly, and respiratory panel, blood work, EKG and chest x-ray ordered and done (I'm OLD. And diabetic. Shortness of breath was respected, thank you).  The doc came in (different guy than Babygirl's) and said, "Wanna place any money on what it is?"  "RSV" He looked a little surprised that I was choosing something so.... sophisticated?  "Nope! It's parainfluenza virus." 

In plain English, I have Croup.  He gave me a shot of Decadron (SuperSteroid) in the arm. Blood work, x-ray, EKG all fine. Employee health took a look at the whole thing and cleared me to go back to work today.  All my patients had already been cancelled, so I'll work from home tomorrow and go back to the office Wednesday.

I kinda like Decadron.  It hurt like a BEAST for a few minutes, but then the breathing magically got better. I was home about 2 hours after I arrived, because I never needed to be in a Room - I got diagnosed, treated and released from the waiting room.

Where are we getting these things?  I'm just calling this another case of Grandma Flu. 

DeeDee

Thanksgiving Quarantine.....

 It's been a long week.  Month. Year.  

Babygirl's acute kidney failure. I'm working through a divorce.  We need a new roof. My tenants are buying a house, and I need to do some serious work on the apartment before new tenants can move in. AND our furnace just died, and we don't get a new one until tomorrow.

Oh, and one more thing.

Babygirl caught a cold about a week ago.  Typical symptoms, feeling crappy but not ill, until Monday.  She sent me a text from dialysis:  "I'm getting a fever. Temperature was 99.8." Typically, she runs about 97. But I know the rules:  "over 100.4 we go in."

She got up to 100.8, but didn't initially say anything. She thought I meant 104 degrees. We cleared that up.

We hit the ER at 6:15, plus or minus. The put her in a private waiting room, but I wasn't allowed in until she had a Room.  Ah, no worries.  Snacks in the doctors' lounge, a nap in the massage chair in the Wellness Room. When they finally actually took her vitals, her temperature was 102.4.

These days when you go to the ED, the triage nurse has the ability to assess the situation, and order whatever tests match the patient and the symptoms. For someone like Babygirl, this would usually be the "Sepsis Workup."  Labs. Cultures. X-rays. They did not do this. They swabbed her throat and did a respiratory disease panel.

We got to a Room about 3 hours after arrival.  The doctor came in, all excited, and said, "You have RSV!  We know what is wrong with you, so you can go home. Did you get the ibuprofen I ordered? That will make you feel a lot better!" The look on my face must have told him something.

"You know, Doc, she got winded taking off her T-shirt and putting on the hospital gown. Also, she's in kidney failure. She CAN NOT take NSAIDs. Her transplant is still getting rid of water and potassium, and keeping her from a lot of miserable diet/fluid restrictions."

He was unaware that one can need dialysis and still have partially functioning kidneys.  I was not surprised by this. If I had given it a moment's thought before Babygirl's diagnosis, I might have thought the same.

To his credit, he took a better look at her.  Examined her, even.  And ordered the sepsis workup. 

Fortunately for us, it was all negative except for some diagnosis-expected bronchial swelling.  We were home a little before 1 AM.

But there is no treatment at all for RSV. It can and does kill babies, the elderly, and the immunocompromised.  And because her immune system can't fight, she needs to stay in her "bubble" for a full month - about 3 more weeks, so she doesn't spread it to the babies in the family.

Today is the first fever-free day. The cough remains appalling.

I have to say that this acute illness has been....grounding. I had quite literally reached the point of bubbling pre-hysteria. A kind of What the Everliving DUCK is my life right now? But Babygirl got sick and is now getting better. The rest is just.... stuff. Hard stuff, but stuff nonetheless.

So here we are, celebrating gratitude for, well, everything. The house is pretty warm today because we have an oven that works and a turkey (that we were supposed to take to another dinner with family), in a roaster in the dining room, adding more heat. I taught Squeaker (who was the bringer of "the cold") how to make homemade piecrust, and the magical chemistry of pumpkin pie. Babygirl made apple crisp from the last of our "Family Apple Picking" supply. 

Home dialysis equipment arrived Wednesday.  I sign for a home equity loan to get everything done on Monday.  I had enough money to pay for a furnace, when a large percentage Americans can't find someone to borrow $500 from (true story.  Someone did a poll about this).

There is a sign in my dining room that says, "Gratitude Changes Everything."  

Yes. And amen. 

DeeDee

The Long Covid Situation......

 As I've obliquely mentioned here and there, Curlygirl has been having issues since her Covid infection in December.

Until she got sick, she was working full-time, raising 3 kids, and updating a recently purchased home with her s/o.

Yes, she had 2 Covid vaccines without obvious side effects. No, she did not have boosters. 

Her s/o was sick at the same time. He had almost no symptoms and recovered entirely within a very few days.

She had mild initial symptoms, with no loss of taste or smell, no cough, no fever.  But within a few days, the shortness of breath began with some mild drops in oxygen levels and a lot of chest pain. Dizziness, blood pressure fluctuations, rapid heartbeat, fatigue, increased sleep, head pressure, body pressure, numbness, tingling, and a sensation of muscle heaviness when standing, imbalance all followed. She has been unable to work since this started and has moved in with me. Her kids live with their fathers.  She feels like she has lost everything.

Of all of this, the shortness of breath is really the only symptom that has improved. 

She has seen pulmonology, cardiology, 2 neurologists (the most useless specialty by far). She has been in the ER no less than 10 times.

Pulmonology gave her some inhalers. They helped and she no longer uses them.

Cardiology diagnosed her with POTS (Postural Orthostatic Hypotension Syndrome). This is autonomic nervous system dysfunction (dysautonomia) common among the post-Covid population. Treatment for this has, to a degree, stabilized the blood pressure and heart rate. The benefit of this is that she can stand up most of the time when she needs to. Missing doses of medication can lead to some severe symptoms for her, so she needs to be pretty religious about this despite the side effects.

She is in contact with a large number of online Covid groups. and has been given tons of conflicting advice. 

She has had online contact with a Lyme Literate Doctor (by the way, there is no certification for this, and some of them are quite dangerous. Hers appears to be one of the safer ones), homeopathic providers, naturopathic providers, Functional Medicine providers.  She has been told that the Covid reactivated a previously undiagnosed Lyme infection, and that she has reactivated EBV (Epstein/Barr virus).

She has had bloodwork done as ordered by many of these providers, several hundred dollars of which was known in advance to not be covered by insurance.

We checked out a Lyme treatment center near Boston. For $10,000 dollars she can undergo treatment for Chronic Lyme that includes proprietary saltwater foot baths to remove toxins from the body via the feet; time on proprietary vibration platforms with oxygen to improve muscle strength, balance, and to kill the Lyme with increased oxygen. In addition, proprietary glasses frames with blinking lights aimed at the eyes concurrently used with proprietary laser pointers aimed according to an individualized map at various areas of the head.  The clients in treatment there all professed great improvement. The chiropractor giving us the tour couldn't give me stats on actual recoveries, nor could she look me in the eye and tell me that she didn't recommend treatment to nearly everybody who showed up, even those with multiple symptoms and totally negative Lyme tests.  The frequent use of the word "proprietary" set my teeth on edge.

She has followed protocols, diets to decrease inflammation, to decrease histamine, and diets to avoid "feeding the EBV virus."

What about a Long Covid Center?  Or a Covid Recovery Center? 

We went to the Long Covid Center in NYC twice.  The cardiologist has been wonderful. The rest, not so much.

There are 3 Covid Recovery Centers in NY state. One exclusively deals with pulmonary issues. The other 2 offer post-Covid PT. Boston won't take patients outside of New England. Johns Hopkins takes Maryland, Delaware, and Washington DC. Penn State takes PA patients only. I haven't checked Cleveland, but that's 6 hours away.

Estimates from good studies show that anywhere from 10-50% of post-Covid patients have long term symptoms, almost completely regardless of the severity of the original infection.  Vaccination reduces but does not eliminate risk of infection.  It also reduces but does not eliminate risk of long-term symptoms. 

The US population is over 332 million. Number of infections, 90 million.  Let's low-ball that number since quite a few of those are re-infections and say, oh, 60 million.  That means that anywhere from 6-30 million people have some form of Long-Covid issues. Of those, about a third are symptomatic enough to struggle to work, and many cannot work. 

Why So Many Long COVID Patients Are Having Suicidal Thoughts This thoughtful Time Magazine article discusses the immense difficulty these patients are having with finding help for their issues. 

I'm a DOCTOR, for the love of all that's holy. And I. Can't. Help. Her.

So that is why we are currently in an adorable 50's motel in Sarasota FL. She is getting 6 hours/day of cold laser and infrared therapy, and I'm getting a few hours a day of beach therapy. Cold lasers have been in use for joint inflammation for a long time. There are protocols in use for Long Covid in Toronto, but most are not covered by the Canadian Health service, so there is that. 

Keeping someone from killing themselves shouldn't be so...opaque. Helping people with a long-term post-infectious syndrome should be something that is getting more reasonable research. 

I feel like I am stuck again in that horrible window back in the early 80's when HIV was a thing, but "And the Band Played On" was the response.  

DeeDee

The Procedure Race.....

 Babygirl and I decided to figure out just how many procedures she's had since New Year's Eve.  It was.... staggering.

I don't have all the dates. But in roughly chronological order, here they are.

In hospital:

     Intubation and insertion of feeding tube.

     Insertion of 3-lumen catheter (the early, temporary version of the dialysis catheter).

     Insertion of arterial line. 

     Blood transfusion x 2.

     Kidney biopsy.

     Insertion of dialysis catheter.

     Transfusion.

After hospital:

     Blood transfusion.

     Upper endoscopy.

     Blood transfusion.

     Fistula creation.

     Blood transfusion.

     Fistula de-clotting. 

     Blood transfusion.

Scheduled for later this month:

     Bone marrow biopsy.

     Fistula angioplasty.

Seventeen. In less than six months.

This does not include thrice-weekly dialysis. It does not include the (very) numerous blood draws.  It doesn't include individual doctor visits, varying in location from 3 hours away to more-or-less across the street. I'm pretty sure I have not worked a full week since last year. 

If it's a race, I think we are in it to win it. 

DeeDee

Hematology........

Hematology is the study of blood, and all things related.  Babygirl met with our first-ever hematologist today. (Hematologists are also oncologists.  I make sure I always tell my anemic patients that they aren't going to the cancer side of the hallway.) 

She continues to struggle with gradually dropping blood counts. Her most recent transfusion was March 30th, and her hemoglobin has continued to gradually drop ever since, but slightly slower that it has been. This week she is down to 6.5 again (normal 12.4-14). We had the hematology appointment scheduled, so I was grateful that we hadn't needed to transfuse ahead of that, in case it would interfere with any of the tests they wanted to run.

It's never really a good sign when you see an uber-specialist scratching his head. I did tell him about nephrology's "erythropoietin resistance" theory. 

He ordered another 12 tubes of blood, hemoccult testing (to see if she is bleeding from the gut. I've suggested this to EVERY doctor we've seen, including GI), and would have ordered a transfusion except that she already had one scheduled for tomorrow. She's having it today instead.

He wants to see her next week to go over results. Next step will likely be a bone marrow biopsy.

DeeDee

PS Really grateful for the transfusion today instead of tomorrow. Here's hoping she feel better for a weekend of Glamping with a friend!

NOT On "The List"......

 So, to answer the first question that I know EVERYBODY has:  No, she is NOT on "The List."

To answer the other question I've heard a few times today, "WTH is going on?"

Last weeks' unexpected clotting catastrophe overrode my typical tendency to keep people in the loop.  Today was scheduled ages ago:  Met the surgical transplant team to see if she can be put on The Transplant Waiting List. It's part of the ongoing process that all potential transplant recipients MUST go through to be listed. Last week, she had all of her initial visits by phone: Dietician, transplant coordinator, financial counselor, social worker.  That took the better part of a day, but we were, at least, at home for that.

Today? Start at 9 AM, meet ALL the people, get blood work and x-rays, and check off all the "missing information" boxes.  We drove down last night to avoid utter exhaustion LOL.

First up was her regular medical transplant NP.  She plays both teams, apparently, and we were fortunate enough to have someone familiar with the situation start us off.  

We had, on the preliminary phone call, discussed Evusheld with her. This is an injection of a pair of anti-covid antibodies that lasts about 6 months to decrease risk of serious infection in high-risk patients. It was in very short supply initially, and you had to literally throw your name into a lottery to get it. You are also supposed to have epinephrine immediately available in case of allergic reaction.  (I popped my EpiPens out of my purse and asked, "Will this do?" "Well, yes....")  Supplies are better now, so her NP ran to the pharmacy and came back and gave her the injections. Repeat in 6 months unless there is a new strain of that covid crap.

She ordered all of the necessary weird blood work that Babygirl needs to clear the hurdles listed below (it was 24 tubes).

Step one Pass/Fail: Pass. 

Next was the surgical transplant nephrologist.  He was a very articulate man who was clearly fluent in both DocSpeak and PatientSpeak.  He didn't condescend, but he has a gift of making complicated things simple.  It is a VERY rare gift. He covered a lot of ground:

1) Babygirl is in the process of actively rejecting a transplanted kidney, and she's had multiple blood transfusions. This means that she has likely developed a LOT of antibodies against, well, nearly ALL other humans.  This means she will be extremely difficult to match.  Since the current average wait time is 5-6 years for a kidney, I didn't see this as good news, particularly.  She might match only 1/1000 available kidneys, or 1/10,000.  

Oddly, this can be good news. In the past 2-3 years the rules have changed for people like her.  The UNOS system puts the EXTREMELY difficult-to-match people at the top of the list, so the very rare matching kidney goes straight to those people right away, from anywhere in the nation.  This doesn't mean she'll match sooner (although it can), but that the one-in-a-million kidney won't go to someone who could safely wait a couple weeks more for a less accurate match.  Blood work done today will assess how bad the antibody situation is, and where she fall on that scoring system. This is a separate score (degree of difficulty, if you will) from the overall (likelihood of longevity of both patient and donor kidney) "how close am I to getting a transplant" score. 

2) Next, he discussed "high risk" kidneys.  He immediately said he would refuse on her behalf any kidney from an older, sicker patient because he wants her to have a kidney with a better life expectancy. Basically, "Let the old people take the old kidneys." On the other hand, he made it plain to her that even a bad kidney is better for her long-term health and prognosis than dialysis (something she was blissfully unaware of until this point.  Not gonna lie, I've kinda kept that to myself). 

So if old kidneys are too risky, what is less risky, you say?  

Drug overdose patients. The ugly, unfortunate truth is that more than a third of the current donors are young people who've made bad choices. Car and motorcycle victims with no known history of IV drug use are a "safer" choice, because needles can be contaminated with HIV, Hepatitis B, and C. She's been vaccinated (two full series) for Hepatitis B.  The last known HIV-to-transplant-recipient transmission was well over 5 years ago nationally. Any potential donor who tests positive for HIV/HepB viruses does NOT donate, ever. However, if there is too little virus to detect, a week or so into the infection, transmission can still occur. Hepatitis C gets its own discussion in a minute. If she's willing to accept a high-risk donor, her odds of getting a match earlier is higher. She agreed, but can change her mind at any time.

3) Known Hepatitis C donors get their own category of risk. Aside from the rare patient where status cannot be determined (an infection less than 2 weeks old), Hep C is a known quantity. About 30% of available young, deceased donors actually have Hepatitis C (from needle use, prison tattoos).  Until a very few years ago, this diagnosis ALSO excluded these donors. However, well over 99% of Hepatitis C cases can be completely cured by current medical treatments with minimal side effects.  She was willing to sign on for this as well. 

4) Apropos of nothing, he remarked that her inability to make blood is likely due to an erythropoietin (the hormone that she has been getting at dialysis, that your kidneys send to your bone marrow to make blood) resistance. This is apparently common during rejection episodes, so he's adding some blood tests to look at how much ongoing inflammation she has going on.

5) Both Babygirl and the donors get a score.  She's young, fundamentally healthy (for a sick kid LOL), and will hopefully get a score of 20/100 or less. That moves her up the list.  Donors get a score also, and the ideal would be to match a donor with a similarly good score with her.  

Step two Pass/Fail? To be determined. 

Finally, we met with the transplant surgeon.  She wanted a CT of Babygirl's belly to outline anatomy. Lucky us! The ER did one in April, so they will get those films.  She ordered an updated chest x-ray and EKG. Her echocardiogram from January is good. No additional doctors need to see her to clear her for surgery, but she does need a dermatology cancer screening and a PAP smear (scheduled, and scheduled).

Step three Pass/Fail?  To be determined. 

The entire team meets every Monday to decide which among the patients hoping to be listed actually qualify, and how they score.  It might be 11 days before we hear anything.

We didn't leave the hospital until after 3. We drove to Seneca Falls to begin exploring the Women's History Museum (it closed a little more than an hour after we got there), and stopped for ice cream before hitting the road. 

So that is WTH is going on.

DeeDee.

The Clot.....

 Babygirl's infant fistula (the connection surgically created to join an artery to a vein in order to enable safe, consistent dialysis access) was placed 3/31/22 (Fistulas and Other Fun Things....). Because of her (very young for this kinda thing!) age, it was placed in a very small artery/vein pair in her left wrist.  We were told it needed to heal for 6 weeks, and be successfully used for dialysis for 2 weeks before they could safely remove the large catheter that has been hanging out of her chest since early January. 

They have been attempting to use the fistula for a couple of weeks now. 

The first time, they were only able to get one of the two necessary needles into it, using the catheter as the second access.  This resulted in a fairly sizeable hematoma (a blood clot OUTSIDE of the blood vessels - a huge bruise-in-the-making) that made it hard enough for me to feel the thrill (vibration) of the fistula that I sent her to the ER to make sure it hadn't clotted off INSIDE the blood vessels. It had not.

A fistula of this type is a connection between a high-pressure artery and a low-pressure vein.  The arterial pressure expands and toughen the vein so it can tolerate the repetitive punctures needed for dialysis. Clotting this off can risk both the arterial flow (cutting off circulation to the hand) and the venous drainage (causing the hand to swell).  On both sides, chunks of clot can break off, traveling either down to the hand or up into the lungs. Really big clots that travel to the lungs can kill. 

Yesterday's attempt to use the fistula for dialysis resulted in clot INSIDE the vessels.  This. Is. Alarming.  Babygirl sent me a text at work: "Call me when you can."  

Now, this kid NEVER asks for anything, ever, so I pay attention when it happens.  I called between patients, and she told me she was being sent from dialysis to her vascular surgery hospital for emergency surgery for the blood clot. There was a well-hidden shadow of fear in her voice. 

The dialysis center was letting her go by cab, not sending her in an ambulance, which was reassuring.

Well. I had 3 patients lined up in rooms already, one of them brand new.  I had to do a fast internal assessment: Am I okay to be seeing patients right now? I've been cancelling days left and right to juggle Babygirl's and Curlygirl's appointments, and balancing THAT against my (really amazing, honestly) ability to compartmentalize my stresses, I opted to see the patients who had already arrived and cancel everybody else.  I told Babygirl I'd meet her at the hospital. The relief in her voice was, well, difficult to compartmentalize.

I packed up my work computer (there's ALWAYS waiting. Always) and a couple of cans of seltzer and arrived at the hospital at noon.  Babygirl got there an hour ahead of me.  Practical as always, she had the cab take her home so she could let the dogs out, and took a Lyft to the hospital.

And then we waited together. We chatted. We looked at TikToks. I finished my charts for the day and took care of medication refills and messages.  And we waited. The surgeon stopped by.  Anesthesia came in for the usual check.  At about that moment Babygirl's stomach rebelled because she had missed a dose of her nausea medication, and she began retching and dry-heaving the entire time the poor guy was there.  "Um, we can't sedate her if she is like this.  It has to be general anesthesia to protect her airway." Well, okay. They threw a motion-sickness patch behind her ear (the one thing nobody has done for the nausea so far.)

At about 4:30 a slot opened up for her to go to the OR. A good friend brought me lunch/dinner. Babygirl was gone for about 3 hours, 2.5 in the OR, and half an hour in recovery.

The clot was cleared.  There was a piece that broke off and went to her hand, but the surgeon dissolved/removed that. He did his level best to not have any significant blood loss, since she has none to spare. He did angioplasty (used a balloon to stretch the vessels open wider, getting them safely to 5 mm (that is less than1/4 inch).  

The surgeon was, like last time, pretty ducking impressed with himself, like a little boy who has succeeded in climbing to the top of the tree for the first time in his little life LOL.  I won't disagree with him.

He told me he was going to be away for the weekend, and who was covering for him while he was gone.  Turns out he was supposed to leave in the early afternoon for a long weekend away, but stayed rather than transfer Babygirl's care to another surgeon. "I'm going to go paint a barn." Um, okay, but be careful on the ladders, dude. I am almost as impressed with him as he is.

He wants to repeat a vascular assessment (AKA repeat the surgical procedure) in 2 weeks.  Apparently, once one clots up like this, you have 30% odds that it will happen again in a month or so. He wants, especially, to repeat the angioplasty to increase the diameter of the fistula to decrease that risk.

In the meantime? No fistula for dialysis, not for a minimum of an additional month. Add at least 6 more weeks to the length of time she's had an open tube hanging out of her chest wall. She can't fully shower/swim STILL during that time. 

She's home, up and moving already this morning, with no appearance of residual sedation.

Back to work.

DeeDee

Wish We Could Turn Back Time.....

 Twenty-One Pilots is one of Babygirl's favorite bands. Sometimes on road trips (AKA Medical Excursions) she'll pick the playlist, and we'll hear, "Wish we could turn back time to the good old days, when the Mamas sang us to sleep, but now we're stressed out." 

I feel ya, Pilots. I feel ya. 

Babygirl had upper endoscopy today, to see if a reason could be found for the vomiting and weight loss.  The doc found a few odd spots, did some biopsies (results, of course, pending), and he noted that one of the biopsy sites bled until he finally clipped it (which, frankly, means nothing in particular medicaly but explains why a 10-minute procedure lasted more than half an hour). 

I took the entire day off to allow for the kinds of things that happen to us.  Sometimes somebody wakes up in the morning, looks at Babygirl's HISTORY instead of her date of birth and does a "you-need-to-show-up-here-2-hours-early sort of thing.  This actually happened on Friday, when they changed our arrival time from 3 PM to 1 PM so they could get the (inevitably negative) pregnancy test and a potassium level (which kinda matters if you don't want to accidentally kill your kidney-failure patient while she is anesthetized). 

I have to laugh sometimes. Based on insurance (Medicare) and diagnosis (on dialysis) they sometimes appear to be looking for a little old lady when they come in the room. 

The change in arrival time meant that I was smart not to work the morning. But it did give me a few hours to work on some other extremely necessary things.

Curly girl hasn't been able to work since before Christmas.  She has NEVER not worked, except for part of the pre-vaccine pandemic, when she stayed home to supervise remote learning for 3 kids (which is Work with a capital W in my opinion). Her illness has been severe enough that she is unable to much around the house, or really care for the kids.  For the time being, she is living with me.

This morning I made her sit down and apply for disability (and by "made" I kinda mean that I yelled at her a lot until she started it). It was a massive struggle for her to do given her level of exhaustion.

While she was doing THAT, I went on hold with the insurance company. I was on hold so long that I had 10 minutes to help Curlygirl with her stuff, 15 minutes to get in the car (with the phone ON HOLD) to pick up Babygirl from dialysis, and a good while after that to keep listening to the on-hold light jazz. When they finally came on, I discussed the latest Explanation of Benefits (EOB) package that had come in.

This truly delightful representative looked at the records:  No secondary insurance was listed for the new claims. To be fair, most of these claims were generated before I spoke to the insurance last time. We spent at least as much time on the phone as I did on hold while she went through claim by individual claim going back to the beginning of February.  She promised to keep working on them all after we hung up. 

I spent the rest of the morning discussing things with the doctor's offices and hospital billing.  I had to speak to our phone company (harder to speak to than hospital billing, TBH) about that fact that both Babygirl and Hubby now have their own damned services so why am I still paying for them???

I'm done with this day.  I mean, a lot got done but WHY does it need to be done in the first place? 

I need someone to sing me to sleep.

DeeDee

PS I'm sitting here finishing a LARGE serving of Pinot Gris.  A big shout-out to Citygirl for making me learn to appreciate wine that isn't swill. And I had a good cry before dinner. Some days you just need that.

Insult to Injury....

 After two days of endless calling to insurance and billing offices, I thought I'd caught them all.

Then the mail came.  The mail ALWAYS comes. This time it brought me a 14-page package of EOBs (Explanation of Benefits. Seriously, you all should look them ALL over carefully!). 

Some were from follow up visits near and far, all, again, reminding me that nobody knows which insurance is primary etc. Some were from her Dialysis Nephrologist. 

But the new news? Dialysis costs $8,010.89 per treatment.  My initial mental math was, "Wow! That's $24K a MONTH!"  Nope.  Nope. Nope. HARD Nope. It's 24K a WEEK. 

Three treatments a week since mid-January, slightly over 3 full months' worth.  45 visits so far. NONE of it paid to date. That's $360,490.05 (don't wanna forget that last nickel). That's more than a third of a million dollars.  For a full year? That's $1,249,699.  

Her transfusions? $2,272.33 EACH.  She's had 3 since January. Her blood counts are dropping again, just to add to all the fun.

We are just beginning to see denials for her ER visit in April. 

When I talked to the insurance, I didn't ASK about these visits and providers, so I have Not. One. Clue. as to whether or not they are in the resubmission pile. I mean, I shouldn't have to ask. To be fair these EOBs were produced well before my conversations with the insurance. 

Sigh.  I see a lot of wasted on-hold time in my future.

DeeDee

If You Have to Ask for the Price.....

 Have you ever window-shopped near Radio City Music Hall? There are never any prices on the items displayed.  And if you go in and ask, you are likely to hear, "If you have to ask me the price, you can't afford it." 

Medical care falls into this category, for SURE.  

I've been working with my insurance company since the EOB's (Explanation of Benefits) began rolling in with many, many indicators that they didn't plan to pay unless we clarified our insurance status.  Babygirl has my BC/BS, Medicare (for disabled folks, old folks, and folks on dialysis) and Medicaid (for poor folks, because she's an adult and her disability money is about $700/month after this year's, um, "generous" cost of living adjustment). Apparently, I have not been entirely successful in this endeavor. 

The bills are rolling in.  

The local ER doc sent a bill for $1653.

The local ER sent a bill for $1700, plus or minus.   For the record, she was in the local ER for 4 hours.

The ambulance company sent us a bill for $4700, mostly for mileage.

The prize-winner, of course, is UR Hospital. They sent me a politely worded request for a check in the amount of $147,639.33, with instructions to "resolve this matter" within 15 days.

Nearly $160,000 for 15 days. For a little over 10 grand a day, we'd have had a better time, well, nearly ANYWHERE. 

I was off yesterday afternoon (2 appointments for myself, thankyouverymuch), and spent 2 hours in between things on hold with insurance and billing offices. 

The problem is this:  When you have multiple types of insurance, there is a fight among them as to who is primarily responsible for these huge bills.  Receiving a letter from Medicare stating IN WRITING from the Federal Government that they are SECOND in line and that BC/BS MUST own up to the fact that they are FIRST has helped some.  Sending all of Babygirl's insurance information (which I now have stored in my phone!) to everybody has helped.

But BC/BS has been mightily slow to take responsibility for all of this, and we are past the 3-month mark on all of this.

Our BC/BS finally agreed, yesterday, that all of these things need to be rebilled.  Once they are (and this will take 30-45 business days to do!), everybody will be able to bill Medicare, and, finally, Medicaid for the balances successively remaining. There should be no residual balances.

THEN I will get to see what remains of our deductible and go after everybody for refunds on the bills I have paid for hubby and me since January 14.  I suspect that we hit our family's full annual deductible by 2 AM on January 1st.  

Today I am traveling to NYC (again) to a Long Covid specialty clinic with Curlygirl.  I'll be on the phone most of the way there, discussing with various doctors' offices and hospitals that things are being fixed, and we need more time.  If anyone balks, I'll put things on a payment plane for the minimum they will accept until things are fixed. I like my credit rating as it is. 

DeeDee

Endless Emesis......

 Babygirl began vomiting shortly after Christmas. We assumed it was a stomach bug, and that the vomiting triggered the rejection episode. 

But the vomiting never, ever stopped. Even when she was intubated and heavily sedated, she vomited. While she was in the hospital, she got around-the-clock ondansetron (Zofran), with haloperidol for breakthrough nausea.  They tried a bunch of other things as well.

Ondansetron is still a daily thing. Vomiting is still an almost daily thing.  Decreased appetite is, for sure, a daily thing. 

This is NOT a little thing.  Since the beginning of January, she's lost FORTY pounds, more than 3 pounds a week.  A week or so ago we had to buy an entirely new wardrobe, as she was reaching the "If I sneeze my pants will fall off" stage of the game. 

It was especially bad Tuesday-Thursday.  Not only was she not eating, she was also unable to keep fluids down, so we had a discussion about whether or not it was time to go to the ED.  The tie-breaker? "Well, last time we waited a little TOO long, so...."

We went. But not until after I had dinner. I've learned a thing or two: NO one benefits if I'm the hangry advocate. 

I don't spend a lot of time in ER's if I can help it. So when she was assigned a bed in the hospital's LECTURE HALL I was a bit nonplussed (she told me when she called me that she was in "the electrical hall." Took me a minute to puzzle THAT one out). Turns out, to handle the busy nights, they immediately do Covid testing on everybody, and put the less-critical negative patients in emergency cots and recliners in 15-18 curtained-off sections of a large room.  I arrived to find her in a chair, between a post-morphine woman who was chattering loudly at 100 MPH on her right and an elderly gentleman who was retching non-stop on her left. The curtains separated the patients but not the visitors. There was definitely not 6 feet between me and my neighbors.

We'd been there about 20 minutes when the area's RN arrived, clearly having had a quick review of Babygirl's problem list. "She's on dialysis? AND she's still on transplant meds??" Yes, Ma'am. "You'd be more comfortable if we put you in the corner by the Hepa filter." YES, Ma'am. Six feet all around and more complete curtain separation.  

IV ondansetron, a liter of fluid, blood work and a CT scan later: Labs unchanged from previous. No evidence of blockage or tumor. Doctor asking, "Has she seen GI? Has she tried Phenergan, Compazine, Haldol?" Yes, yes, yes, and yes. "I got nothin'." Well, okay, that's not what he said, but it's what he MEANT, LOL.

She felt better, and got through the next 12 hours without further symptoms. GI is doing endoscopy in a couple of weeks. I called her primary and asked if she could try dronabinol (synthetic THC, used for chemo/AIDS patients with vomiting and weight loss. You know, "pot pills"). He checked with the transplant team, and sent in a prescription. I'll get them today. 

DeeDee

Success....

 It's been a long day.  Long.  

Babygirl is fine.  They were, despite the very unpromising vein studies, able to find a vein and artery of suitable size near her left wrist.  The challenges of working with the smaller vessels stretched a 2 hour procedure to three hours. But the final result is worth it, sparing her upper arms for later procedures.  And the surgeon was very, VERY proud of himself.

I hate waiting.  And this was not at all a peaceful wait. I cried in the bathroom. There were two fire alarms, and FIVE stroke emergencies in the ED. There was a code in the infusion center.  I saw a body wheeling by while I was waiting to use the restroom. I watched puppy videos and random TikToks.   Staff in ambulatory surgery offered me a drink.  THAT made me teary (I told you before that I've reached the point where, if anyone dares to be nice to me, I cry, so be forewarned. 

I'm. Tired.

DeeDee

Lab Orders Should NOT Be the Thing.....

 Lab orders should not make us crazy. Yet here we are.

About 3 weeks ago (does time have any actual meaning anymore?  I have no concrete way of being sure it hasn't been 2 months since then) Babygirl had her outpatient transfusion.  Her hemoglobin hopped up from 5.8 to about 6.8 and gradually worked its way up into the high 7's, significantly better. But then it began a fairly steep decline, to the point where it dropped below 7, making the vascular surgeon uncomfortable with proceeding. Oh, and by the way, has she been cleared for this by her primary physician? Well, no, since you didn't request it, it didn't get scheduled.

So, the race is on.

Friday they let Babygirl know that she has an appointment with GI. On Monday. So I had TODAY only to rearrange my schedule.  Again.  

Tomorrow, the family doctor is squeezing her in for a pre-op visit at 6:30 AM. Yes, really.  And he got her set up for a transfusion tomorrow. I made sure to ask, "Is this a type-and-crossmatch? Last time it was a type-and-screen, and they had to redo the labs and wait an extra two hours to get the transfusion." I was assured that the correct labs had been ordered this time. 

We met the new GI doc today (and by "new" I would like to point out that his name isn't on the stationery yet - he's still a write-in LOL).  He ordered some blood work, suggested that a hematology consult would be a GREAT idea. He plans on doing upper endoscopy, as he is reasonably certain that she will not be able to tolerate the prep for colonoscopy, given her overall level of nausea. He made sure we had more nausea pills. He also said that if the Protonix wasn't working at twice a day that there was no need to take it more than once a day. He also said that switching to another medication in the same class is not useful. 

So we hike the half a mile of corridors from his office to the lab, and register for his lab work (ordered an hour earlier) and the family doc's lab work (ordered this morning).  The woman registering us said she saw labs from both doctors, and sent us back.  

When the phlebotomist finished, she put a bandaid on Babygirl and turned to leave. "Hey, wait - where's the red bracelet?" 

When anyone has labs done specifically to match them with a specific bag of blood, a red bracelet is placed on the patient with a special number to help avoid errors. Babygirl didn't get the bracelet with the first set of blood last time, and had to endure a second stick for the correct lab work to get the transfusion.

The phlebotomist looked me dead in the eye and said, "It wasn't ordered." We had to go out to registration, where the clerk said, "That's not what was ordered." 

Well....duck. 

I mean, it's not a crisis, exactly. And getting blood work done is no big deal, right? Except that we've already proven that she has TINY veins, and that they aren't in fabulous shape, and is it TOO GODDAM MUCH to ask that she NOT get poked twice for every ducking thing they order??

I generally don't call the on call guy if I can help it. But I called.  Twice, because there was no response when they sent a text (turns out the poor guy was just on call 3 days ago and didn't realize he was up again - somebody must be on vacation). He listened to the story, and said he'd call the lab to see what the deal was.

So, some unneeded education in the foolishness that is Electronic Medical Records.  Our system, when we order things, offers us the option of NOW/STAT or Future Order. We learned early on that the first option does not actually work, so if you want something STAT you put in a Future Order and write STAT in a little box.  Perfectly sensible. But if I put in a Future Order I am essentially ordering something for tomorrow. This is generally immediately visible, so if the patient goes to the lab same day, there is no problem.

Except, apparently, for the type-and-cross. THAT test, ordered this morning, will not be visible until 3 AM. So did didn't actually "exist" yet when we went to the lab. Clear?  DUCK, no. But that is where we are. 

Our remaining options are to get it done right before the transfusion and wait the extra hours, or stop at the lab on our way home from the doctor's at 7 AM. For the second second stick. 

Surgery is still on for Thursday. I think.

DeeDee

PS Not sure if I should call administration, or IT about this one. 

Fistulas and Other Fun Things....

 I mentioned in my last post that Babygirl had seen a vascular surgeon (more on that later, remember?).  Vascular surgeons fix problems with peripheral arteries and veins. (Cardiovascular surgeons do the central stuff.) So why go there?

Since the middle of January Babygirl has had a dialysis port hanging out of her chest.  It's big. It's uncomfortable. It's an alleyway from the outside of her body to the inside.  She can't get it wet (so Saran Wrap and cloth tape are standard equipment in our bathroom these days). She is DYING to take a shower. She wants to be able to swim when the season hits.

She needs a fistula.  

Fistulas (in general) are abnormal connections between one place and another. Rectovaginal fistulas occur during rough childbirth, and connect the rectum to the vagina. Colovesical fistulas connect the bowel and the bladder.  There are others, but you get the idea. What Babygirl needs is an arteriovenous (AV) fistula, a deliberate connection between an artery and a vein. 

Dialysis happens 3 hours a week for 4 hours.  Ordinary veins are not cut out to handle the volume of fluid that has to go IN and OUT of the needle. Veins just aren't that tough. Connecting an artery to a vein pushes arterial blood at high pressure, and makes it get bigger. And tougher. 

They scanned all of the veins in her arms to get ready for this. Anticipating that she will likely be on dialysis a while, and perhaps again after the NEXT transplant fails, the hope was that they would find a vein and an artery big enough to work with in her wrist, so that when it inevitably fails, they'd be able to place one above it in the forearm, and then the lower arm, then upper arm, and so on, using up available sites in her non-dominant arm before having to move to the dominant side (since during dialysis the arm with the needle in it has to be STILL). 

Sigh.

The veins in her wrists and forearms are all 1-2 mm in size, too too too TOO small to connect to the (equally too small) arteries.  So her initial fistula will be above the elbow, on the inside of her arm. It's not ideal. But it WILL be waterproof.

She had preop testing today, and, once again, her hemoglobin is below 7, not safe for a procedure that opens up an artery on purpose. 

Which takes us to the question, "Why?"

Her hemoglobin was in the 11's before the kidney died, and dropped like a ROCK when it happened (a process that should have taken some considerable time, honestly, not less than 3 weeks). 

So.  Is she bleeding somewhere? Is there some new issue that is stopping her from making blood despite IV iron infusions and erythropoietin replacement? She's been vomiting almost daily since we got home, and it was vomiting that apparently started the rejection. Everybody's been assuming that the initial vomiting was a "bug" and the current vomiting has something to do with dialysis, but.... 

All of a sudden there's talk of a GI referral, and a hematology referral.  Considering she has lost 30 pounds since January, I'm thinking that somebody needs to look at something. 

I DON'T want this surgery delayed. It takes a minimum of 4 weeks for a fistula to mature, and the fistula has to prove functionality with 2 weeks of use at dialysis before they can pull the port from her chest. That means that the port will be in place for a minimum of 4 months, which scares me a little. 

Surgery is schedule for a week from today. Dialysis is MWF from 5:30 AM to 9:30 AM.  The odds of them doing all they need to do by then seem small.

DeeDee

Reaching the Billing Office....

 Babygirl had an appointment with her vascular surgery team today.  More on that later.

Taking the afternoon off for a 1 PM appointment can leave one with a free weekday afternoon. Perfect. This is just what I need, so I can start calling hospital billing offices and insurance companies about the bills. 

Let's go back to October. Hubby was admitted TWICE in October. The first bill has been paid. The second was deemed "Not Medically Necessary." Well, since his admitting diagnosis was "Anaphylactic Shock," and they needed to remove the pump that was shoving in more of the antibiotic he was suddenly allergic to, AND try to find a NEW antibiotic that wouldn't kill him, control the ongoing BONE infections, and control the super-high blood sugars that resulted from the emergency allergy treatments?  Well, I beg to differ. I contested it, was told it would be covered. All $12,360.52.  

But I have in my hand an EOB (explanation of benefits) that says the insurance isn't going to pay for ANY of it, and I can't for the life of me figure out what the attached code even means. 

Next to that is an EOB for Babygirls $4187 ambulance ride on New Year's Eve. Same code. Same "we ain't paying" vibe. 

Now, I know that the 12/31/21 ED visit at the local hospital was covered and has been paid. But not the ambulance ride.

Following this? The $134,424.27 we owe U of R hospital for saving Babygirl's life (the Covid she caught there? No extra charge). According to our insurance, they don't have enough information about her OTHER insurance to decide.  

Same-same for her blood work at the local hospital, $1504.10, from early February. 

Now, I can understand that U of R and the ambulance company COULD be missing some information, but her U of R DOCTOR visit in December was covered, no problem. And it's not like the change of year seems to have any impact there: 12/31 is as unpaid as 1/1-1/14.

But then:  WhatTheLivingDUCK is the issue with OUR hospital? 12/31/21 correctly billed and paid for, and 2/3/22, you don't have her (entirely unchanged!) insurance information?

There is no way to connect these dots sensibly, so I started making phone calls. I don't have any actual bills in my hand, and my goal is to NOT have any by getting ahead of this. But if you DON'T have a bill, you don't have a billing office phone number. The Ascension website was willing to get me financial counseling, set up a payment plan, and half-a-dozen other fun things, but not cough up a number. Twice I ended up waiting for "the next available representative" only to discover that I was talking to PHYSICIAN billing and not HOSPITAL billing. 

It took me WAY too long to think of calling the hospital operator. Seriously. They know things. 

Then I spent the NEXT 56 minutes coming to a Really Good Idea of why I'd waited so long.  The woman I spoke to had to search by Hubby's and Babygirl's birthdays since I didn't have actual billing accounts. Then SHE had to figure out what the codes meant, and what to do about it.

Apparently they changed operating systems (or something?) and some bills still needed to be entered into the new system as they were discovered. Hubby's October visit and Babygirl's ambulance ride got "entered into a spread sheet" for further evaluation. Chat again in 45 days. Super. 

The rest of everything had to do with a lack of insurance information. She was as puzzled as I as to why, if they weren't confused in December, they are confused now? 

My next idea was to call the insurance company. She said, "That can be challenging. Let me do it. I'll call you back." I must have sounded, well, as they say, some kinda way.

We are past business hours now, and I've not gotten a call. I feel like there's an ice pick in my left eye, and honestly, putting it there myself would have been less painful than all of this Ducking nonsense. 

DeeDee

The New Normal.....

 We've settled in.  Dialysis three times weekly, with variably reliable taxi service courtesy of Medicaid.  Miscellaneous other appointments at an average of 3/week (including those for Curlygirl, who is still struggling with post-Covid craziness. 

There are still issues with severe anemia.  Babygirl's pre-rejection hemoglobin averaged in the 11's (12.5+ is normal, but close enough to be comfortable). Her post-rejection hemoglobin has yet to reach much over 6.5, and periodically drops to 5.8, which increases her fatigue, and makes her short of breath walking at a slow pace on any mild grade. 

They offered her a transfusion. She felt she didn't need one. 

I asked why? I mean, she never really refuses treatments, so....what?

Her answer was entirely sensible. And ENTIRELY off base.

"My hemoglobin A1c was 6.2 in the hospital, and that's lower than it's ever been.  Isn't 5.8 better?"

Hmmmmm.....

Hemoglobin (the stuff that caries oxygen to your vital organs and stuff) vs Hemoglobin A1c (a measurement of how much glucose is trapped inside your red blood cells, a measurement of your blood sugar average for the past 3 months)?  I frequently forget how much medical people know that lay people do NOT. Much confusion happens when we forget to translate the language of medicine to the language of, well, people. 

Once I explained the difference, and which of her symptoms were likely due to her anemia (and how hemoglobin is one of the ways we assess anemia), she opted in.  

Oddly, the dialysis center does not DO transfusions. I mean, they have a HUGE IV in her already, so why??

So, after a dialysis treatment, she had to switch hospitals and go to an infusion center for an additional 3 hours to get a unit of blood. She preferred that to doing it on one of her "days off."

In other news, the transplant team in Rochester wants her to meet up with the branch of the team that decides whether or not she qualifies to go back on the transplant list. Babygirl views that as Moving Forward, the next step.

I don't disagree. But it also means that the transplant team holds out no hope at all for the recovery of Jorge's kidney. I knew, that once she caught Covid, there was no way to save the kidney and her both at the same time.  But, now, I KNOW.  And it makes me sad. 

DeeDee

Anniversaries......

 It wasn't that I wasn't mindful of it.  I just couldn't....grapple with it. 

February third is the day I always think of Jorge's parents:  Their unbelievable loss.  Their unbelievable courage and kindness.  Their unbearable grief. But this year, although they didn't know it, another part of their son is dying. I think I will not write them about this. It is not something they need to know. And it's hard. Really, really hard.

February 4th is the "kidneyversary."  It would have been TEN YEARS if the kidney had made it. Ten years.  I cannot compare my grief to theirs, but I am grieving, nonetheless. Babygirl has lost her freedom, her energy.  Hemodialysis doesn't suck as badly as peritoneal dialysis did, but....it sucks.

So last night we watched the Superbowl.  We had snacks. We enjoyed the game. But every now and then I thought of that Superbowl, 10 years ago, when we had SO MUCH hope that the battle we'd been fighting was over. We were, obviously, overoptimistic. 

DeeDee

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.