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