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