High-level Tired....

 We left this morning at 6 AM for our second trip to Rochester this week.  Her appointment was at 11, labs to be done first (which takes about 1.5 hours due to staffing shortages).  Babygirl's bladder has not had very much to do for the last 18 months, so now that she is producing large amounts of urine, she has to pee every hour until her bladder stretches out some. Taking all of that together, allowing 3 hours for travel and breaks and granting additional in case of more than usual glitches in the lab, we planned to arrive around 9. Monday's appointment was at 10.  We went the night before and stayed in a hotel for that one.

Travel was pretty efficient and the lab fairly timely, so we had time to take a (smoky!) walk in the big cemetery across from the hospital. We spotted a pretty good sized pyramid in the distance (I assume a mausoleum) so that's our target for the next walk. 

The visit went quickly. The doctor sent a message to urology to tell them to cancel the (to him and us) unnecessary extra appointment in 2 weeks. Why do they need to see her twice in 3 days? He discontinued her water pills since she has lost all but 4 of the 60 pounds of extra fluid the transplant gave her. He increased an antiviral since her kidney is functioning well enough to remove it. 

We got her most recent lab results: Anemia is improving (showing good long-term function of the kidney) and creatinine is down to 1.7 (from 7 or 8 after the kidney went in).  Yippee! The kidney, while not functioning perfectly, is officially awake. 

We did some exploration of the Erie Canal on the way home, and had dinner at all-you-can-eat crab night at the local casino.  

We arrived home at 8.  

I am too old for 14 hours of travel in one day.  Even if it's a GOOD day.

DeeDee

Weird Stuff Part II....

I should have waited one more day for the last post.

Last night at 11:30, long after Babygirl and I had gone to bed, my cell rang from a PA number. Since I have family in PA, I picked up.

Random Man With Deep Southern Accent:  "So, Ma'am, are you still interested in buying the snapping turtle?  It's a GREAT turtle. It does tricks and it even barks!" 

Me: "You have the wrong number," followed by me hanging up.

RMWDSA: Calls back. 

Me: "You have the wrong number."

RMWDSA: "Please text me." 

Me: "No." and I hang up. 

RMWDSA: Calls back AGAIN. "Ma'am, about the turtle...."

Me:  "I am a LONG way from home and am taking my kid to the hospital in the morning.  If you wake me up ONE MORE TIME I am coming through the phone to ducking KILL you."

RMWDSA: "OH! Sorry, Ma'am. Yes, Ma'am!" Hangs up.

I mean.....I can't....what?

DeeDee

The Weird Little Stuff......

 We are back in Rochester for Babygirl's recheck tomorrow morning. I gave some thought to this process on the way.

During any journey, be it medical, educational or recreational, things happen.  The are rarely germane to the process in any way, and get left out of the main narrative. Here are a few examples:

On our (rapid paced!) way up here to receive the transplant, we hit a 30 minute traffic jam.  There was no immediate evidence of construction or police, and we just crawled along with the crowd.  When we finally began to arrive at the problem, the first thing I saw was skid marks leading to a big Penske rental truck, cocked at an angle in the left lane.  Getting closer, I could see evidence that a fire had been put out,  Passing the truck, we came to a tow truck that had already loaded the cremated remains of a crumpled car.  If the people who were in there didn't get out quickly, there's no hope that anyone in that vehicle survived. It was not the most hopeful thing to pass when you are taking your kid for major surgery.

In completely the opposite spirit:  On our way here today we passed a small pickup truck.  Bumper sticker read, "I'm really happy with this tiny truck because I have an ENORMOUS penis." I laughed so hard it's lucky I didn't crash.

I had one sleep deprived moment when I asked one of her doctors some question that was breathtakingly stupid.  They patient explained whatever it was without actually saying WhatTheDuck is wrong with this woman. 

Clearly, there are a lot of things that just....happen.  But the best, oddest, WhatTheEverlivingDUCK moment was when one of kidney surgeons was discussing maintaining a good blood pressure, as Babygirl's was running low and he wanted higher pressure to keep good blood flow to the transplant.  

"If your pressure is too low, I want you to get some French fries. NO, don't eat them - you are diabetic. Just lick the salt off of all of them." I am absolutely sure he meant it. 

You canNOT make this sort of thing up.  

The difference between surgeons and medical people?  Transplant nephrology said, "If you aren't lightheaded your blood pressure numbers are irrelevant. If you are perfusing your brain, you are perfusing the kidney."  He stopped the medications that were there to push her pressure up. 

Thank God for the ones with common sense.

DeeDee

Adulting is a PIB....

 When the kids were little, before I took up cussing like it was a full-time job, I used to call them PIBs:  Pains in the Butt. It's more polite than the commoner PITA. 

I spent nearly ALL of today doing adult PIB stuff. 

I began with a list of 7 phone calls I needed to make. I think I made 15 of them and have one left. 

We need a place to stay Sunday night for Babygirl's Monday appointment. I needed to try to rearrange some of her urology appointments so we don't have to make 3 trips to Rochester in one week instead of just 2. I had to check in with Employee Health so that I could return to work as scheduled. Clear up insurance info on past due medical bills. You get the idea.

I also closed the bank account that I opened when I was 18. Since about a dozen things were being paid directly out of this account, I had to make phone calls/website visits for all of these as well.

Almost everything has been handled. A couple of things are works in progress.  And to add to it all I kept GETTING calls. One of those calls was extremely useful, however.

Babygirl's Medicare plan (United Healthcare - I can't say enough good about this in her situation) has a transplant coordinator. She called to see how Babygirl was doing since the transplant. And the readmission. How is she doing monitoring her blood sugar?  How is she managing her medications? Side effects if any? 

Then: "Are there any financial challenges due to the transplant?" "There would be if she had to pay for it herself."

It turns out she qualifies for up to $125/day for travel and expenses. This will likely backdate to her May appointment, and would be enough to get back all of her (my) hotel and mileage expenses. This would be a blessing for certain.  We need to get prior authorization from her Rochester doctors, which will most likely be entirely handled by Rochester's transplant coordinator.  

I'm a little excited that all my Adulting PIB crap may have some valuable yield. 

DeeDee

The Gradual Wake-up......

Yesterday's follow up visit in Rochester was LONG. The appointment was at 10:30, and she was to have labs before she went.  We left the house at 6 AM, and arrived before 9.  The plan was to get the labs done, and then go for breakfast.

She was in the lab for over an hour.  This is, I hear, typical. For some reason, hospitals lost more phlebotomists than any other group of people when vaccine mandates were placed.  None of us have recovered to pre-pandemic blood-draw capabilities, but DANG. We snagged some (perfectly terrible) breakfast sandwiches from the cafeteria and bolted upstairs for her appointment.

They were running behind, in large part to the lab delay. Some patients had given up on the lab and come upstairs because they didn't want to be late for their appointments, which meant that the nurses had to draw their blood, adding to the slowdown. 

We'd met the doc last year when she got on the transplant list.  Babygirl said, "I forgot what a....presence he is."  He is, as they say, "a lot," but adorable, communicative, and upbeat. He was overwhelmingly enthusiastic about the new kidney. Babygirl is making more that 3L of urine a day, and it is finally completely clear.  Her weight has dropped from 189 to 166 (2 gallons down, 3 to go!). Her potassium and phosphorus levels are normal:  "Eat more of everything we told you not to eat or those levels will go too LOW." He remains concerned about her blood sugar and wants her to watch it more closely.

But the most exciting for me is that her creatinine has dropped from over 6 to 3.5.  Normal is under 1, so we aren't there yet, but this was a massive change compared to the previous gradual creep toward normal.  Transplant nephrology plans to notify dialysis nephrology, and let them know that they can come and take all of her dialysis stuff back. Babygirl is very excited about regaining some space!

The transplant pharmacist went over all of her medications in detail. One has been discontinued, and another decreased.  Next appointment is Monday. 

We arrived home at 5 PM.  Thankfully, my SIL had come up from Philly and did all of the driving.  I'm exhausted but I can't sleep right at the moment. I have a list of 8 phone calls I need to make today to cover things like paid leave, appointment rescheduling, and home financial stuff.  It's clearly too early for that, so I'm going back to bed. 

DeeDee

Elopement.....

 Babygirl was discharged Tuesday. Things continued to be stable, or gradually improving.  

The docs came in and told us this.  I told them, "I live three hours away and a friend is coming to pick us up. It will take them 3 hours to get here. Should I call them?"  "Sure."

Nearly 3 hours later my friend was about an hour away, and we'd seen no hint of discharge paperwork, IV removal, catheter supplies etc.  I asked for an update from the nurse, and she said that the discharge orders hadn't been placed yet.

I've waited a lot of hours in my life for discharge.  The record was 15 hours once at CHOP.  Last week here it was 7 hours. I've got somebody doing the MASSIVE favor of driving a total of 6 hours so we can get home. 

"We were told 3 hours.  So when my friend gets here, this is what is going to happen:  We are going to LEAVE.  With or without discharge papers. I know how to take an IV out myself, and I can get supplies from my own hospital if it comes to that."

Well.  That made her, verklempt.  She is the person who will take the heat if we elope, and it isn't her fault at all.  But DANG, this is our second hospital stay in less than a week and I am DONE.  She asked if we had been told a specific time for discharge, and I mentioned the 3 hour story as above.  "You really should have ASKED for a time."  "Your doctors should be able to effectively communicate a time."

She scurried.  She pushed cajoled, and bugged people. She made sure we had the supplies we need so that if we walked we wouldn't go unprepared. 

My friend arrived, and the nurse was still working on things, and said, "But it's dangerous to leave without instructions!"  Well, considering we got 12 pages of instructions literally read to us line by line only 3 days ago and nothing has changed except the catheter, I think we're covered. About 20 minutes later she got the paperwork, Babygirl signed it, and we asked for the wheelchair that we'd been using to Babygirl from point A-B.  "There's a meeting in that room.  We have to wait for transportation." 

The hell we do.  I asked Babygirl if she thought she could walk it.  She said yes.  I picked up all of our stuff and we walked out unnoticed. 

We made it to the discharge area, unnoticed.  And ran away to home.

A HUGE thanks for such excellent friends. 

DeeDee

Don't Use the "Q" Word....

 After yesterday's chaos, today was a calm day.  I mean, I had a Reuben for breakfast at 10:30 AM. 

We don't know much more now than we did this morning.  Things are not getting worse, and may be slowly improving. Labs, generally are better. The morning ultrasounds, not different enough to lead to any procedures today but requiring follow up. My brother asked if the kidney was "woked up" yet.  I said it's not, but it appears to be sleepwalking. We'll take it as progress for the moment. 

No one has really spoken about discharging Babygirl from the hospital yet except to say that she may need to keep the catheter in for another week at minimum. Even that was nebulous, so we are just in wait-and-see mode. 

Personally, I think they stopped the bladder irrigation too soon, and discharged her when she was still less than stable.  But nobody died, and except for a few hours suffering due to the overfull bladder (which we can both be salty about for sure), she has not lost any ground as a result.  

We got outdoors today into the sunshine, which made Babygirl very happy.  She did a lot of walking, and I pushed the wheelchair a few hundred extra steps. She has been sound asleep for over an hour, and I confess I snoozed a bit as well.

Those of us in the medical word are deeply superstitious about using the word "Quiet."  But that is the best description of the day that I can give, and we needed one of those.

DeeDee

So, What the Duck Just Happened.....

 It's almost 11 PM, and my day started around 5 AM and has, thus far, included 2 meals from McDonald's, 2 ERs, one 3 hour ambulance ride, a PBJ, a most delightful conversation with a yoga instructor/Uber driver, and being known by name on sight to the hotel front desk staff.

What do we know so far? Other than acknowledging that having a catheter feels better than an overfilled bladder, not much.

Babygirl had a urinary catheter in place from last Saturday morning until about 12:01 AM Friday. That catheter had to be changed, and was frequently manipulated during multiple irrigations. From the time of the catheter removal until about midnight last night,  (24 hours) Babygirl was voiding reassuringly clear urine, but not in large amounts. 

Then there was the clot. And then the urinary retention. 

What we don't know is whether or not the inability to pee was due to blockage caused by additional clots, or whether it was due to spasm of the urethral sphincter as a result of having a catheter for 6 days. All of the urine today has been bloody (from Hawaiian punch to pink lemonade) but with no clots. However, the AMOUNT of urine she is making is excellent - more than 2 1/2 liters today, actually more than she drank for the day. 

Her blood work doesn't look bad. She is gaining ground on the anemia.  Her potassium is normal. Her kidney function is stable, maybe a little better, but it still sucks. 

Additionally, her weight continues to rise due to water retention. We're up 55 pounds in just over a week. Nephrology will be seeing her tonight and reassessing the plan for this, I guess. 

For right now, she is admitted.  She told me that she is going to be angry with me if I show up at 8 AM. "Get some SLEEP, mom!"

That is the plan. 

DeeDee

The Merry-go-round.......

 "Mom.  Mom, I think I need to go to the hospital."

My brother drove up from Philly yesterday to help out. So far he has put a ceiling light fixture back together, and shared 3 bottles of wine with me.  We had a significant sibling therapy session until about 2 AM. I gotta stop drinking. It makes ducking medical sh.....stuff happen, apparently.

Babygirl was doing well enough yesterday.  She walked with me through the Farmers' Market, and I pushed her in a wheelchair cart through Aldi. After a long nap, we went to Walmart where she practiced driving a store scooter. 

Around midnight, she called me to the bathroom to look a clot she'd passed.  It was 2-3 cm x 1 cm, but her urine otherwise looked normal. "We just have to keep an eye on it."

At 5:30 she woke me up and told me that couldn't void at all, and she was in pain.  Enough pain to make her cry.  I'd like to point out that this has happened only once before, due to nerve pain after a spinal tap. Her pain levels in the hospital with a fresh 9" incision she rated as 5/10.  This she gave 7-8/10.  We called the Transplant Team as we were driving to the ER. They agreed that local assessment was appropriate. 

Currently she is parked at Wilson, with a catheter back in place. Her bladder drained almost 800 cc, and she feels much better. I'm across the street at McDonald's getting breakfast and coffee, waiting for labs. 

I would very much like to get off of this ride.

DeeDee 

The Hidden Costs of Medical Crises....

 Fortunately for us, there should be no true bills for Babygirl's transplant. She is disabled, and has Medicare and Medicaid.  The hospital is taking over her transplant medication at their transplant pharmacy, so I will no longer have to sit for half an hour at CVS until they finally (once again!) figure out that she doesn't have BC/BS and that her co-payment is currently $0.

This post is about the more subtle costs of an 7 nights/8 day medical stay.   

Babygirl's current transplant center is slightly closer to us than CHOP was at 145 miles vs 174 miles away. In the case of CHOP, however, we had family to stay with less than an hour from the hospital. This meant, for the most part, breakfast and dinner with the family and lunch at the hospital, dinner on the way home.

We have friends in Rochester, and could probably, in a pinch, find a couch to crash on, but the hospital has an arrangement with several local hotels to discount stays for patients and family. (Having a private place to decompress (ie bawl your face off) is sanity-saving.) A couple of those are less than 2 miles from the hospital (walking distance for me, weather permitting).  Total hotel costs on this trip came to $476. Most of her appointments in the next few months are at 8 AM.  Deciding whether to drive down the night before or before dawn is a difference of $60-80/trip. We will be going twice weekly for a month or so, and then weekly for a while. 

Last time I was here with Babygirl, we arrived via ambulance in the dead of winter.  I kept meal costs down by using InstaCart for groceries, which I used for breakfast and dinner, and sometime even for a packed lunch.  I made up for it by needing to use Uber to travel all of the time as it was too cold and icy to walk.

This time, I had my car. I didn't pay to travel, but I wasn't as thrifty with food. Meals out became one of the biggest costs at $303.

Miscellaneous costs were also high, as I had to replace a laptop in addition to other incidental costs: $459

I had to shop for clothes for Babygirl.  She packed as if she were going to camp, but by the end of the hospital stay, none of her clothes fit due to the severe fluid retention. This included her sneakers. $80 to Target for two outfits and expandable sandals 2 sizes up from her usual. 

OTC medications and incidentals (which may or may not include nail polish for Citygirl and Babygirl): $67

Parking was odd this time, as apparently they were short staffed at the garage. They only charged if there was someone on duty. Instead of paying $42, I paid $12. Gas was $63. 

We are blessed beyond and beyond by having the means to cover this, even if it tightens the budget a bit.  We are even more blessed that friends and family just keep walking up to us (or to our Venmo or UberEats accounts) to give us money. We have been given a total of $750 in this way.

The total non-medical cost of this trip was just under $1500, half of which has been covered by the kindness of friends. 

I got me some thank-you notes to write.

DeeDee

Restarting the Insurance Battles.....

 Babygirl is going home today.  All the doctors have seen her, PT made her climb some more stairs (12 this time!), she has been given and taught how to use a glucose meter. We need diet lists for low phosphorus and low potassium diets (potassium is easy to find online, phosphorus is more complicated), but I want to know what THEY want her to do, thank you.  The doc who is discharging her told us to ask for them when they give her the discharge papers. This seems needlessly.....delaying.  I'll ask the front desk soon.

I did a Target run last night to get roomier clothes and shoes to accommodate the now 50 pounds of extra fluid. The kidney is still asleep. I will need to do a pharmacy run before we leave. 

In the meantime, insurance.  

I took Babygirl off of my insurance at the end of last year.  She is 23, and she is entitled to extra coverage from Medicare for 3 years after a transplant, so I figured she'd be covered until she was 26 one way or the other. Because she is disabled, this will probably continue. She is poor, so she'll get Medicaid as well.  Since having 3 insurances last year was a clusterduck, it seemed practical to get rid of BC/BS.

I got a call a day or two ago from her Medicare provider that they had "authorized the kidney transplant." Well, that's super kind of you. 

They told the hospital the same thing, but reminded them that she still has BC/BS.  Well, no.

I have had conversations with Medicare about the discontinuation of the BC/BS, MONTHS ago.  I'm still struggling every time we go to the pharmacy with the "she still has BC/BS concept.  

Yesterday I called BC/BS. They confirm that Babygirl is NOT insured.  I proactively asked them to send me written proof of that.  

Lord.  None of this is complicated, is it really?

DeeDee

I Want Coffee....

 For a very long time after her last transplant failed almost 18 months ago, Babygirl has had issues with how things taste and what she wants to eat, and some general overall poor appetite.  One of the things she has not tolerated well has been coffee, a daily staple since she was 2 (she's from Guatemala. She CAME to us addicted to coffee).  Even the AMAZING coffee at the Farmers' Market was dicey. She'd ask for half a cup and throw most of it away.

But for yesterday and today at least, she's ordering coffee or decaf with her meals, and iced coffee today, and generally finishing it.  The numbers on her new kidney still suck overall, but she is peeing a lot more.  Call me crazy, but I find it reassuring that some of her pre-kidney failure taste is returning.

We will most likely be heading home tomorrow.  They are pulling her catheter at midnight.  Why midnight, you might ask (because I certainly did)? Because it takes a few hours to fill a bladder, and if she is going to have a problem with clots or spasms or poor emptying they'd rather she have to deal with it in the morning rather than the middle of the night. Sometimes the odd things doctors do make a peculiar sort of sense.

We have to return on Tuesday, and again on Thursday.  I need to spend at least part of my day tomorrow updating those leaves with FMLA.  I also would like to ask her primary doctor if she needs to do any blood work for him. She's due to see him in July, so he might want updates on the stuff he manages, like her blood sugar and cholesterol (although I think endocrinology is on board for the time being as well as nephrology and urology).

My gratitude to the people who have stuffed our UberEats and Venmo with cash so she can order whatever-the-duck she wants to eat while we get the house reorganized. 

My eternal love and gratitude to all of you for your support, prayers, kind thoughts and good wishes.

DeeDee 

PS I'm leaving the laptop with Babygirl for the night so she can watch endless anime.  She was also watching a video of an very elderly RBG doing PT.  It's amazing what is online, and what catches her interest.  

Pink Lemonade....

 I am doing better, thank you one and all for your concern and prayers. Our day was immensely blessed by a visit from our former pastor.  He was around for Kidney Transplant 1.0, and used to carry pockets full of medication to go with her meals and snacks. He came just short of commanding God to wake up that kidney.

Today's nurse was a childhood transplant recipient, himself on transplant #2.  It's always a hopeful thing to meet someone who is further down the road you are walking on.

Babygirl is stable. The kidney is still sleeping, but she is off of the heart monitor, which she was on due to the cardiac risk of elevated potassium levels. Her potassium is being controlled by diet and by giving her a medication that sucks potassium into her gut and eliminates it from that route. Her calcium levels are extremely low (an indirect abnormality due to other things that kidney failure triggers), so that has been supplemented IV. They expect to stop the IV fluids, although so far every time one group tells her this, the other says, nope, need to keep it going. So we'll see who wins this time. Her urine resembles pink lemonade. Her output is good, but not keeping up with the fluid backlog. The catheter is still producing some clots, on the smallish size, and irrigation isn't getting anything much more than that, so MAYBE the catheter will be out tomorrow? If so, the question is, can she pee on her own, and will any new clots clog things up?

If A, then B, then C all happen, we might go home Friday.  If not, it might be Tuesday. Or she may come home with the catheter. In any case, we need to be here Monday because even if we go home, she sees the doctors up here Monday and Thursday morning for the next few weeks. 

If she stays the weekend, I will leave on Friday for home.  There is no space in the discounted hotels for the weekend, and I am almost out of medicine. And the garden needs to be weeded. And the dogs cleaned up after. And the pool monitored. And Babygirl's room cleaned to post-transplant levels. And the icky 2-week-old food cleared from the fridge.  

You know, a day off. 

In any case, I did a Target run to get clothes that will (I hope) comfortably fit over the now 40 pounds of fluid she is carrying. There was a cool anime T-shirt on the sale rack.  I'm hoping she likes it.

DeeDee

Facing Down the Day....

I am tired. Discouraged. Weepy.  All things that Babygirl does not need to see today, or any day for that matter. 

Nothing specific has happened since yesterday, it's just that I need an injection of something stronger than coffee to keep me moving today.  I need optimism.

The problem with being a physician is that the Doctor portion of my brain is always making lists out of medical information:  What is the likely problem?  What is the worst possible problem? The things on each list are identical, but the first orders things from common to uncommon while the second orders things from most deadly to least deadly. If the person in front of you is your patient, this is the best approach: Eliminate the deadly things with the appropriate tests, and confirm the likely things in the same way.

The problem with Babygirl's situation is that she is uber-specialized. Every single thing that has happened and is happening to her remains almost entirely out of my scope of knowledge. What I do know frightens and confuses me.  

Usually in an acute family situation I am able to let the doc in charge prioritize, while I compartmentalize and put the medical that I know into a box and sit on the lid. Babygirl is very aware of this process, and smart enough to ask me to keep the lid on the damned box, at least in her presence.  Typically, compartmentalization has been my superpower, but I apparently let the lid go in my sleep last night.  I absolutely KNOW that I have no control over this, but I want to find a way to control it. That way lies madness. 

I've showered. I've had breakfast. I've had my coffee. I've meditated and spent some time in prayer for others that I know need that. And now I'm writing. Documenting what is INSIDE my head puts it OUTSIDE my head, usually. Whatever I do, I need to go to that hospital in a few minutes with no swelling under my eyes and a smile on my face. It's what moms do.

Keep those prayers coming. The entire serenity prayer needs to be downloaded and hardwired into my soul.

DeeDee

Still Sleeping...

 It feels like it's been a long day, although actually it's been a full day on a night of poor sleep.'

I was very slow to get going this morning. Visiting hours are from 8 AM - 8 PM, and I've been there at opening bell so far, but it was 8:05 when I let Babygirl know I hadn't left the hotel yet.  She said, "That's okay, they're sending me for dialysis." 

This is the second time since the new transplant that they've had to do this. The issue this time was rising potassium (although not as bad as the emergently terrible level a couple of days ago) and rising creatinine. Since visitors are not allowed there, I had some extra time.  What to do?

I was in need of some headphones, since Babygirl has been using mine.  Maybe a pedicure? Maybe...? It's fun to have some choices.  

I went to Target for headphones. I debated a pedicure, but really, I just had my toes done.  Besides, we had "transplant training" scheduled at 11, although it was very unlikely that Babygirl would make it back in time for that.

So I took a walk. Babygirl is tired of being indoors, and so I snapped pictures of all kinds of crazy things for her: Sculptures, historic markers, flowers, a hot dog stand, historic gravestones, flowers, and more sculpture, socks for sale in the gift shop. There is a MASSIVE cemetery across the street from the hospital. Frederick Douglas and Susan B Anthony are buried there (and now I feel obligated to go hunt for them LOL). Our nurse told us that when he was in 8th grade his class did a "famous peoples' graves" scavenger hunt. I was impressed and maybe a little appalled. 

Babygirl is feeling better enough to take a lap or two around the nurses station, unlike Sunday, when she made it 10 feet and had to sit down.

Since the continuous bladder irrigation (which is, by the way, painless) was discontinued, she has continued to see blood and small clots in the catheter tubing. Urology continues to come to do manual irrigation (which is, by the way, NOT painless) every 6 hours.  There are always clots, although typically smaller than a grape in size. 

And, as you can guess from the ongoing need for dialysis, the kidney is still not "awake." 

DeeDee

Chunky Merlot....

 Warnitng:  There are photos. You might not want to see them.

Also, Babygirl has granted permission for you to see them.  Those of you who know her well....she's laughing at you.

Reflecting on the last post:  Blood clots are all well and good when they are usefully plugging a hole in your body so you don't bleed to death.  Other than that, they can be....problematic.  Now, Babygirl's clots aren't the kind that can travel anywhere but out. There is no connection between the bladder and say, the lungs or heart.  That doesn't mean that they can't wreak havoc locally.

An ultrasound revealed a 10 cm clot in her bladder. For the metric-challenged, that's about 4 inches.  If spherical, we're talking half a liter of blood, one entire transfusion unit more-or-less.  It's not going to fit out of ANY catheter, no matter what size.  

Enter The Urologist with a couple of gallons of saline and some very big syringes.  She explains the nature of the problem to Babygirl:  It's big, it's blocking bladder drainage, and it may be putting pressure on the new kidney.  "We have to break it into small enough pieces to suck it out.  Sadly, I'm going to make you feel worse before I make you feel better." Honestly, a better approach than the doctors who hurt you and tell you you're being a baby about it.

This woman had no ducks to give with regard to putting her weight behind the fluid she was blowing into Babygirl's bladder.  She kept it up for somewhere between 20 and 30 minutes. Babygirl broke out in a sweat and stayed that way, but did not complain.  The doc said that older men had been known to scream obscenities at her at this point.

And this is what we got, 4 liters' worth:  

Yes, she's very pregnant.  She was putting the weight of two people into her work today.

The surgeon described them as ranging from "chunky Merlot" to "Hawaiian Punch" to "pink lemonade." I'm not sure what her fascination was with drinks, but....

Babygirl is more comfortable now.  Since this massive (invasion of privacy) irrigation, she has been placed on Continuous Bladder Irrigation (CBI). That means that there is constant addition of saline to the bladder, which then drains out the catheter, creating "a river rather than a pond" to decrease the risk of additional clotting. 

And no, no one is completely sure where the blood is coming from. They are admitting that the amount of blood is unusual, but no one seems particularly worried about it. The one reassuring thing is that it is collecting in the bladder rather than outside of it. THAT would mean they need to go back in and fix something, preferably yesterday. 

DeeDee

Blood Clots and Other Fun Things....

 The kidney is still really not much "awake." Her creatinine was coming down a bit, and is now going up a bit. Patience. Is. Not. My. Strong. Suit.

Her urine has become increasingly bloody, and they have flushed her catheter a couple of times and brought out some small clots.  However, a bladder scan this morning picked up 300 cc (a comfortably almost full bladder) when her bladder should be empty. I mean, there is a catheter in there.

Urology was in to try to wash all the clots out. Flushing was less than successful, so the catheter was changed up.  She said, "Think of it like drinking a really thick milkshake. A bigger straw makes it easier." Yikes. They will be back to keep things draining.

The surgical team (urology) isn't sure where the blood is coming from specifically. It could be from where the kidney is connected to the bladder. It could be the kidney itself. They did not express any concern about her progress. They do not know where the kidney traveled from, but it was "on ice" for 27 hours. Up to 36 is considered acceptable. Again, yikes.

However, on the more fun side, Babygirl is able to move to a sitting position in the bed without assistance. She ate some breakfast. We got her into the bathroom to freshen up, which made her feel better overall. PT came and took her for a hike down the hallway, and had her climb up 2 steps.  She is supposed to get up and walk 4 more times today if possible.

The medical team (nephrology) hasn't been in, and they are the ones who will be making the decisions about what to do with the 30 pounds of fluid that Babygirl has aquired since she arrived.

DeeDee

Waiting for the Kidney to Wake Up.....

 It took quite a while for Babygirl's new kidney to arrive here from wherever it came from.  That means there was a long "cold time."  From the time an organ is harvested until it is attached to its new owner, that organ is kept on ice to slow cell death and improve viability.  The longer the cold time, the more cell death/organ damage. The longer the cold time, the more likely it is that the organ won't function as well (or at all) when transplanted.  

How do you see if the new kidney is doing what it is supposed to do?  

1) Measure the urine output. For someone Babygirl's size, normal output with 2 liters/day input is 30-90 ml/hour (about 1-3 oz/hour).

2) Measure the standard renal function tests (BUN/Creatinine/GFR).

3) Measure secondary labs of things affected by kidney function: Potassium in the short term, hemoglobin in the long term. 

So, Babygirl.

1) Last night her urine output was about 15 ml/hour. This has improved but not entirely normalized with overhydration, which leaves her feeling really puffy and bloated. She has a catheter in, and the urine is bloody (which is not surprising but last time I recall a large quantity of clear yellow urine). To be safe, they just flushed the Foley catheter, which removed some small clots, and allowed a moderate amount of trapped urine out. This did make the output look somewhat better.

2) Standard renal function tests look, well, terrible.  Since the kidney isn't putting out much urine, this is not unexpected, and will hopefully improve.

3) Hemogobin just doesn't count here. She was anemic getting here, as always, and lost blood during the surgery, and is still bleeding into her urine, so no matter what the new kidney has to say about it, she's going to stay anemic.  Anemic enough that she is getting a transfusion later, once there is an IV available that isn't already occupied with giving her some other life-saving medication. 

Potassium, however?  THAT went up from normal (3.5-5) to 7.5 after Citygirl and I left last night. So the emergency dialysis team got called in for the second time since we got here to dialyze her in the night.  She did not get much rest. Subsequent potassium levels have hovered above 5, but in the high-but-safe range.  7.5, by contrast, is in the cardiac arrythmia range. She is on a potassium restricted diet (apple juice ok, OJ no way).

I've been told it can take a week to "wake up" a stressed transplanted kidney.  Because of this, she may require dialysis off and on during that time.  

Unrelated specifically to kidney surgery (in other words, complications that can occur with ANY abdominal surgery), she has a collection of fluid in the abdomen.  It wasn't there postoperatively yesterday when she had her first ultrasound, but it was there this morning. CT scan confirms the fluid, but (somehow?) made it clear that she does not need a drain placed, or surgical evacuation.  Repeat ultrasound in the AM.

There is a team of 8 people in here right now prioritizing her need for anti-rejection medication against her need for blood.  It is a complicated rock/paper/scissors game, trying to avoid giving 2 highly allergenic things at once, making sure that if she has a reaction to something, we know which-the-heck thing caused it.

This is more-or-less run of the mill postoperative....stuff.

That doesn't mean I am enjoying the moment. 

DeeDee

How "The Day" Went....

Yesterday was momentous.  Terrifying. Full of excitement, fear, grief, joy, gratitude. 

Very shortly after my last post, Babygirl's surgeon (who, buy the way, I have never (and might never) laid eyes on called to tell me that the surgery went well, was uncomplicated, and Babygirl was headed to recovery.  Weeping in public is generally not my thing, but....there we were. I tried to put in a blog update, but discovered that my poor computer, which had taken a little fall Friday evening (the power cord got tangled in Babygirl's hospital bed while they were starting to move her to dialyis) died. It was the final blow to an already cracked screen.

Citygirl and I, aware that there was a LONG wait for recovery, went to lunch.  The Lebanese place was closed, but there was Indian take-out next door.  We then headed to Best Buy to replace the laptop.  Since there was a Target in the same plaza, Citygirl eagerly went there to find some clean, comfortable clothing. 

I was in Best Buy for less than 20 minutes.  I found a laptop on sale, a sleeve to keep it safe, threw in the 2-year protection plan and walked out for just over $250. My credit card breathed a sigh of relief because it was the first non-alcohol purchase in over a week.  I'm pretty sure I was going to start seeing ads in my feed for rehab.

I went to the parking lot, unpackaged everything and left the box/papers/etc etc etc in the cart.  Don't judge me. 

I met Citygirl at Target, and found an adorable (translate: Appropriate for elementary school) backpack/cooler. Since a computer backpack priced in at $149 (what the DUCK, Target?) I felt this was a better option. The cooler foam will add some cushion to the little sleeve, and have room for the rest of the crap I'm toting around. Citygirl found some very cozy sweats.

We went to the new hotel, checked in, got Citygirl changed and went back, stopping in the parking ramp so I could grab a clean shirt from the trunk of my car, since the saddest thing that happened to me yesterday was dropping a freshly-purchased cup of Iced Americano, which exploded all over me and the waiting room carpet.

The we waited. And waited. And waited. We get glimpses of eternity in these waits.  Citygirl did work on her computer. I read, watched stupid entertaining videos on my phone, and spent some time getting the new computer up and running (a work in progress to be sure), and wandering around until I found the hospital chapel.

I was forever. It was frightening.  After much longer than the expected wait, we went to the cafeteria, got some sad salads for dinner, and decided we would demand an update when we got back.  I turned out to be unnecessary. Babygirl was back in her room.

We stayed with her until visiting hours closed at 8, went back to the hotel and drank a bottle of wine by the pool, and literally cried about everything from 1998 until now and went to bed feeling...cleaner.

Thankfully we already had the wine. My credit card doesn't need to know.

DeeDee

Midday Update...

 Baygirl went into the OR at about 6:30 AM, and is still there as of 12:40 PM.  She is expected to be there for another hour or so.

As far as we know, she is doing well.  She'll be in recovery for at least 3-4 hours after she gets out of the OR. We can't see her until after THAT.

Citygirl is hanging out with me here, and once Babygirl is out of the OR we plan to walk around the corner for some Lebanese food.  

We have snacks. There is a coffee shop.  And helplessness.  And hopefulness.  

Thanks for holding us all in your thoughts and prayers. 

DeeDee

I REALLY Miss CHOP....

 I miss, terribly, the access I had for Babygirl when she was a pediatric patient. Because she is an adult, my access to her (and my ability to be a support to her) are MUCH more limited.

That being said....

Babygirl was sent for dialysis about midnight.  I was no allowed in dialysis with her, and after she was gone was informed that i couldn't stay in her room because she wasn't there.  Bye-bye, no idea when she is going in for surgery in the morning, kidney is still in transit, see ya at 8 when visiting hours open back up. 

Well, duck.

There were no social workers who would contact the local hotels to confirm that I qualify for the hospital discount. My first call to a hotel got me in for tonight but they can't keep me for the 5 days I'm likely to need to be here.

I got a call about 6:30 that Babygirl is on her way to the OR.  I didn't have a chance to talk to her.  I still can't go in until 8.  I don't know where I'm staying tonight.  I want MY mommy. 

To answer your questions:

The donor is deceased. We would have had many weeks notice for a living donor.

Yes, this was fast, both in the sense that she was only listed for about 18 months, and in the sense that we had very little warning.  The lack of warning has to do with the fact that when someone dies and donates, there is a rapidly ticking clock on the length of time those organs remain viable. 

The short wait is more complicated.  The average wait is 3-5 years for an adult organ recipient.  However, ones place on the list is multifactorial.  Babygirl was placed on the top of the list, not just locally, but NATIONALLY.  And again, the reasons for that placement are complicated. 

The first and most important reason is that she has a (partially) live donor kidney already in her body.  Her immune system is systematically killing that kidney, but it has had some residual function: She still produces urine, potassium is apparently being cleared. But she has a gazillion antibodies in her body working to kill that sucker, and those same antibodies will go to town on any kidney that doesn't match ALMOST EXACTLY to her current situation. She is young, healthy and needs a kidney that will last a long time, so preferably a young donor.  The odds of finding such as kidney are about 1:10,000. But because the match is so difficult, she was at the top of the list, all lists, so that if that 1:10,00 kidney turned up by some miracle, it would bypass everybody else on the list and go directly to her, since another kidney like that might take years to find. 

This kidney is a GOOD match.  Donor her age, size, and tissue type.  So here we are. 

DeeDee

Here We Go Again.....

 I had a lovely vacation, thank you.  Today, I woke up, had coffee, and went kayaking. Breakfast was yogurt parfait, and then we packed up and checked out, loading all of the wine purchased during the week into my SIL's SUV.  

Then, at 11 AM, we had a 10-wine blind tasting. At noon, bourbon cocktails, followed by a 4-course lunch with a wine paired for each.  

At 3 we bade a tearful goodbye to all our vacation companions and hit the road. 

About 10 minutes in, I got a message from Babygirl: "Might have an offer."  I called her, and she told me she was on standby for a new kidney. 

Well.  At this point I am closer to the transplant center than to home. I'm also not safe to drive.  My SIL is willing to make a U-turn, and we have a good friend who will drop all and grab babygirl and run, but we have no real confirmation yet that the kidney is hers.

We grab coffee and arrive home.  My SIL leaves, and within another 10 minutes we get the call: It's yours, let's find a bed for you while you get on the road. 

I had to dump a suitcase full of dirty clothes and hope to heaven that I have enough clean clothes to get me through a few MORE days out of town.

We are here at UR Hospital, checked in. She will need dialysis before the surgery, and she is scheduled in the morning.

Thank you for all of your ongoing prayers and support. I'll update as I can.

DeeDee