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.