Archive for September, 2013

Nuthin’ to See Here

‘Sup.

It’s been awhile since we’ve provided an update.  Back in August we hunkered down and went dark for a couple of weeks when things started slipping and we were dealing with her kidneys.  This time it’s exactly the opposite – things have been so (relatively) “normal” that there’s been little new information to provide from day to day.

Eliana restarted her dialysis treatments on the 16th, about 5 days after inserting the new catheter.  And its working!  After two full weeks of dialysis the old incision sites seem to be healing up quite nicely (Hank is craving an opportunity to pick off some scabs but Amy won’t let him), and there’s nothing seeping, oozing or dripping from the new incisions.  Any day without seeping, oozing or dripping is a good day.

The kid looks good, dang it, and we’ve gotten clearance to hold her both off and on dialysis, so we can settle in and coo at any time of the day or night.

And we do.

As the dialysis has become routine and all her numbers start to normalize she also has also turned into…well…an actual child.  As you might guess, it’s been tough to just stand around and observe this little tubed-up creature swaddled in a ball, lying in a crib and staring at the ceiling and walls all day.  And one might imagine she hasn’t been having much fun either.  But over the past few weeks as the treatment has kicked in she’s cut back on the yelling, calmed down tremendously and and become much more alert.  She’s looking around, tracking things with her eyes, reaching out at objects and generally just starting to act like an honest-to-goodness infant.  Awesome.

So where does that leave us?  Still in the NICU for the time being, but with that hope that things are genuinely improving.  We’re scheduled to begin our own crash course in dialysis and other home medical care around the end of October and we’ll see where it goes from there.  Possibly even – gasp! – out of here…

Yay.

We hope,

September 30, 2013 at 9:22 PM Leave a comment

Once More Unto the (dialysis catheter) Breach

Ay, ay, ay.  Here we go again.

Another surgery yesterday.  This time they replaced the dialysis catheter that had never fully healed in.  So the bad news is that she had to undergo surgery yet again (I think this is 4 so far), but the good news is that this will hopefully fix the leaking problem and her dialysis will work correctly in the future.  Of course they’ll have her off the machine for a few days to let things heal up a bit so she’ll be getting puffy again, but we’ll be able to do some good old fashioned holding and cuddling.  

Hard to find bright sides to things; we’re doing the best we can.

 

September 12, 2013 at 10:11 PM Leave a comment

What’s a Preunion?

Of course the medicine practiced at the Hershey Medical Center NICU is good, but it’s really the people who make the unit.  And this from someone who’s not always so fond of people in general (still Hank writing today).

Around mid-August, as we were learning of Eliana’s kidney problems, we received a postcard inviting us to attend the 2013 NICU Reunion celebration.  The timing could have been better.  We forgot about it until a bedside nurse mentioned it yesterday.  Given that Shira can sometimes benefit from a distraction while we’re at the hospital (“I’m BORED!”) we figured we’d give it a try.  But since Eliana is still in the hospital we decided to call it a ‘preunion’ this year.

Face-painting, carriage rides, horse rides (then another horse ride), cotton candy, popcorn.  Yippee!  And in the couple of hours we spent there, numerous nurses and doctors stopped to chat with us.  But not in the “you probably are or were a patient so I should stop and pretend to care” sort of way,  It was clear that they knew exactly who we were – even some of the ones we didn’t see regularly – which was quite nice.  And many of the families with older children – even some from a few years ago – got the same treatment.  Just warmed my heart.

Now if they could only get the $%&*$^%# dialysis to work right everything would be just peachy.

September 8, 2013 at 9:19 PM Leave a comment

A Rich Inheritance

A light thought for the day:

When you look at Shira it’s easy to see that she inherited Amy’s chin and cheek dimples.  As far as we can tell, Eliana doesn’t have those.  Definitely nothing in the chin, and we’re not sure about the cheeks – she hasn’t been smiling much so it’s hard to tell…

But one thing Eliana DID inherit from Amy is this cute tongue thing she does when she’s yellling.  Her little tongue sticks out and sort of waggles just like Bart Simpson.

And now back to our regularly scheduled program:

Eliana’s been doing her best with dialysis for the last few days, but her incisions STILL haven’t healed up and she’s pretty leaky.  At this point it appears they just aren’t going to heal as-is, so the doctors are trying to figure out the best approach.  Most likely result is that they’ll send her back to surgery so the surgeons can take a peek and see just where the problem is.  It’s possible they can stitch something up from the inside, or they may just have to seal those areas and move the tube elsewhere.  Not a great answer for us, but not really unexpected given how things have been going.

That said, the dialysis is working pretty well given her limitations.  She’s still able to push off some fluids – just not as efficiently – and her numbers are coming back in line.  The docs will try to normalize her as best they can over the next few days in preparation for the surgery since she’ll have to be off for a few days (again!) to recover from the surgery in an attempt to avoid more problems.  Likely to see surgery (and ventilator, etc.) sometime in the middle of next week.

September 7, 2013 at 7:07 PM Leave a comment

An Infectious Laugh at Fate

So here I am watching Pitt get pasted by Florida State (28-10 at the end of 1st half; maybe it will get better?) and reflecting on the long weekend.  When we were making the decision to start dialysis the docs basically said “she’s gonna’ get infections – probably lots of infections – once we put these tubes in, so you’d better get used to it.”

So guess what happened two weeks later?  You’ll never guess…

That’s right – her first bout of peritonitis.  Yippee!  Looks like it probably snuck in through one of her as-of-yet unhealed incisions (she looks a bit like a baby fountain at times) and set up shop.  So she’s  on her first official round of antibiotics and we’re in the race to see how many infections we can rack up.  I’m hoping that the number is…let’s see…one.  But we’ll see.

The good news is that as the antibiotics start to kick in her incisions are getting less red and irritated. Which means that SHE is getting less red and irritated. And that’s good, because she’d been on a steady diet of painkillers for a few days there.  Dialysis has been on hold for a few days while things settle down, which means she’s getting edematous (puffy and swollen with fluid) again.  But it also means that she can be held at any moment of the day so at least there’s that.

September 2, 2013 at 10:05 AM Leave a comment


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