Archive for May, 2015

Take Me To Your Liter

1.  Can I get some credit for these clever titles?  I mean, really…that’s half the fun of each post.

2. Today was a good day.

As you’ll no doubt remember, a few days ago the doctors were unable to figure out why Eliana hadn’t been able to reclaim a lot of fluid that had kind of seeped out into her fleshy bits and caused lots of edema (third spacing, they call it).  They figured she just needed more time.

In the past couple of days things started looking up, and it was clear that she was pushing a bunch of that fluid out.  But while the fleshy bits were shrinking down, her belly was still all big and firm.  Part of that is because they just put a fist-sized kidney into that space and moved everything else around.  But the other part seemed to be that there was “some extra fluid around her belly.”  Um…yeah.

So…on Saturday they ever so carefully placed a small needle in her belly, hooked it up to some tubing, and tried to drain “some extra fluid.”  By the time they were done, the official count was 1430 milliliters (though it was likely more than that).  They let things settle down overnight, then drained around 300 milliliters more on Sunday morning.  Let’s round off to a 2 day total of 1750 mL, or 1.75 liters.

Pretty easy to visualize that one.  Get out a 2 liter bottle of soda, pour yourself a glass, and stare in amazement as you realize everything that’s left in the bottle WAS SITTING INSIDE A 22 MONTH-OLD BABY! Or consider this – prior to surgery she weighed in at about 32 pounds, and this fluid would have weighed around 4 pounds – 1/8 of her body weight.

With all that extra fluid sitting in her, is it any wonder her vital signs were wacky and she was having trouble breathing?

Fluid goes away Saturday, vitals stabilize almost immediately, and all of the sudden by Sunday they can take out the breathing tube.  Yippee – Extubation Day!

So now she’s breathing on her own again and much less sedated.  Of course she’s still tied down to the bed (literally) so she won’t pull out any of the multiple IV lines in her, which makes here REALLY REALLY MAD!  But all in all, I wouldn’t want her any other way.

May 31, 2015 at 10:31 PM 2 comments

Where Everybody Knows Your Name

After hearing everyone ask, “How’s Eliana?” these past few days, I can’t help humming a few bars of the Cheers theme song. Sing it with me now:

“Making your way in the world today
Takes everything you’ve got

Taking a break from all your worries, sure would help a lot
Wouldn’t you like to get away?

Sometimes you want to go where everybody knows your name…”

Sometimes it does seem like everyone in the hospital knows her name. Several people over the past few days have even remembered that she’s in the same room she was in nine months ago after her last surgery. Although they always say they are glad not to see her–better to be healthy and stay away from the hospital. We’ll be visiting this place a lot this summer, though. She’ll have frequent labs drawn and clinic visits to adjust medication and make sure the kidney is working.

While Eliana’s recovering, Hank and I have a lot of time to fill as we take turns spending time at the hospital. So I had plenty of time to read up on “Where Everybody Knows Your Name,” one of the most popular and memorable theme songs of any TV series. Gary Portnoy, cowriter of the theme song and its singer, had this to say in an interview about the story behind the song: “I think the first part of the song really connects with people’s angst, and then the chorus says, ‘There’s hope. There’s help.’ There’s some warmth, some connectivity, some hope that there’s a place where things are a little better.”

Amen. We are thrilled with starting this new journey and looking forward to the days ahead when Eliana can do some simple things every kid should enjoy, like splashing in a pool, eating an ice cream cone, chasing fireflies late on a summer night.

May 29, 2015 at 7:55 AM Leave a comment

Eh.

So how’s it going?

Eh.

The good news is that the kidney itself seems to be working reasonably well.  The not as good news is that other stuff isn’t working quite as well and there’s really no good answer why.

What’s that?  You want a quick medical lesson?  OK…happy to oblige…

The majority of one’s body is fluid.  To drastically oversimplify, there are three main places for that fluid to hang out – in your cells (intracellular), in your bloodstream (intravascular) and…elsewhere – including in the spaces between your cells (interstitial).  The ‘other’ is sometimes referred to as “third space,” and loss of fluids to that space is called “third spacing.”

When things are going well there’s a nice balance between all the fluids.  Kidneys (or dialysis) takes extra fluid and waste out of the blood, you drink fluids that get reabsorbed, and various fluids shift between different spots to keep everything in equilibrium behind the scenes. But sometimes – like when your body goes through a trauma (such as a major operation) the blood vessels just leak fluid and don’t like to take it back.

Ordinarily, they’d get her hopped up on diuretics (yay Lasix!) to ‘dry her out’ and then let the third-spaced fluids absorb back into the bloodstream.  But it ain’t happening – she’s just leaking and not reabsorbing. They’ve pretty much treated for the major medical reasons that might cause this, and the current advice is that we’re just going to have to give her some extra time to heal and it should, in theory, start to pick up once she’s ready for it to pick up.  In the meantime she’s still on the ventilator and heavily sedated, which isn’t great, but isn’t terrible either.

Mostly just eh.

May 26, 2015 at 8:37 PM 4 comments

Do as I do, not as I say

We were finally allowed in Eliana’s room a little after 5:00 yesterday. Then…the tornado of doctors, nurses, respiratory therapists and various other professionals.  I’d sit down long enough to take a breath, only to have three people pop in to jot down six test results or monitor reading and then tweak some things.  It’s exactly what we’d been warned to expect, but draining nonetheless.

If one were to just listen to the doctors discussing all the test results and trying to figure them out you’d think she was in bad shape.  But after a 20 minute conversation about all her oddities they’ll turn and say “she’s doing great – no changes for now.”  Or “these test results don’t make sense, but this other one is what we really care about and it’s GREAT.”

Much like the stock market, you can make yourself crazy if you try to track every single item every minute of every day.  A lot of stuff is just noise, and life is better when you can figure out ho to block out the noise and focus on the important stuff. In this case, if the doctors make a change it’s probably worth paying attention, but if they don’t take action based on some test result I can probably choose to not worry about it either.

Which brings me to what you’re really wondering.  She’s doing pretty well overall.

Long story short, her test results show the kidney is doing a great job of filtering out creatinine – a primary measurement of kidney function. Normal is somewhere under .5 (five-tenths but on dialysis she was regularly as high as 6-8 (no decimal point).  By this morning, 18 hours after surgery, she was down within the normal range. Yippee!  Still lots of other adjustments to be made, but the big stuff seems to be working great for now.

May 21, 2015 at 10:15 PM 2 comments

Would You Rather…?

There’s a saying that “It’s better to be pissed off than pissed on.”

Today, this is not true.  After speaking with the surgeon, the waiting room secretary called out to us: “We have pee!”  Never in our family has a wet diaper been so eagerly anticipated.

Still have some time until we can see her, but they’re closing up and we’ll speak with the surgeon shortly.

Next step..throw out everything we’ve learned about dialysis and all her meds and start over from scratch. Yippee!

May 20, 2015 at 3:45 PM 6 comments

Don’t make me turn this car around!

Now that we’re On Our Way, the only next logical question is “are we there yet?”

Huh? Huh? Huh? Huh?  Are we there yet?  I’m getting hungry!  Daaaaaaaad, she’s touching me!  Make him stop breathing on me! Are we there yet?  Are we there yet?  Huh? Huh? Huh?

But on this road trip there’s hardly any of that, ’cause it turns out we’re here already.

Holy crap.

Getting Eliana active on the transplant list seemed to take forever, but it’s taken less than a week to secure a kidney.  They called  yesterday morning to let us know there were two available kidneys and that she was #3 on the list.  Called later in the day to say she was continuing in a backup spot but there was still a chance.

Then at about 4:15 am the phone rang with instructions for us to show up by about 6 am to start the process.  A few of hours of testing and paperwork, and she was off to the OR by 9:30.  Now the fun part…waiting for the 4-6 (or more) hours it’s going to take for the surgery and initial recovery. (Made a bit easier by a nice little concert by Steven Courtney and Lisa Lewis – they must have gotten the music memo.)  If all goes well we’ll be with her in the PICU by dinnertime, then hanging out here at Hershey for the next couple of weeks as things even out.

Here we go!  Wish us luck…and stay on your side of the seat, would ya?

May 20, 2015 at 11:40 AM 10 comments

Oh We’re on Our Way…

Growing up, when we Lerner kids would head to Vineland, NJ for a visit we’d have to sing at least a couple verses of “We’re on our way, OH we’re on our way, on our way to Grandma’s farm!” (If you’re not familiar, listen here, but substitute “Grandma” – and imagine 3-4 kids under 12 singing it…along with Matilda, for those who knew her.)

But it wasn’t just a placeholder nursery rhyme for us – we’d usually be visiting Grandma Gussie (Great Grandma, technically, but that doesn’t fit the melody) and she actually owned a farm with a barn and growing things and animals and everything.  Even an attached country store where kids would be dispatched to get a can of tuna to make lunch – weirdly enough, one of my most vivid memories of the farm.

But I digress.

I’m reminded of the song today as we can announce that Eliana is, finally, active on the list for a possible deceased donor kidney.  Word came in at the end of last week, and we’re just on pins and needles now.  Could be tomorrow (literally), could be a week, could be months…but we are definitely On Our Way.

All together now…”We’re on our way, OH we’re on our way, on our way to possibly receiving a deceased donor kidney!…”

May 19, 2015 at 8:28 PM 2 comments


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