Special Back-to-School Edition of the Clubhouse News

The Clubhouse News 09-01-14

September 1, 2014 at 12:27 PM 2 comments

Finally!

Home again!

Finally.

Eliana’s (theoretical) 3-5 day hospital stay only took 12 days – a bit long, even for her.  But we’re here, she’s asleep, and a nurse is on the way.

Home Again

Home again!

August 24, 2014 at 8:53 PM 1 comment

May You Have an Easy Fast

On the Jewish holy day of Yom Kippur, Jews observe a total fast that goes for about 25 hours.  (Though I’d note that my mother literally moves heaven and earth to make the sun set around 4 pm at their house – still haven’t figured out how it’s so localized…)

One of the traditional greetings on Yom Kippur is to wish someone an “easy fast.”

In a clear example of the “two Jews, three opinions” rule there are varied interpretations of just what that means (find a few here, here and here).  But the gist of it is that while you should have enough discomfort to recognize that you’re fasting (and why), there’s no reason to be miserable all day. If you plan ahead, anticipate the fast and treat the day with appropriate respect, you can have a meaningful experience rather than just suffering all day.

I was thinking about this saying during the past week.  It’s Eliana’s 4th admission in the 10 months or so she’s been home.  The first couple of times were pretty uncomfortable.  Maybe we didn’t think to pack an overnight bag, or we’d find ourselves in the room with nothing to do or eat. And sleeping in those rooms is a nightmare.  But before Admission #3 earlier in the year we decided to just accept the situation for what it is, and plan ahead for Mom and Dad to be as comfortable as one can be in the hospital.

So last Tuesday I got into the hospital parking garage and unloaded our twin memory foam mattress topper, a nice thick pillow, a bag of snacks and drinks, a bag of toys (for Eliana), my tablet, some reading material, copies of her meds and formula recipe, and a few other things I’m probably forgetting.  Oh…and a baby.  We’ll have more of these stays in our future, so we might as well plan ahead to make it as easy as possible.  It’s unfortunate that we have to see that much of the hospital, but once you accept it as part of life it’s easier to take it all in stride. Now each time we can refine our system just a bit more so we can “have an easy stay” for each admission instead of being flat out miserable when we don’t have to be.

Note to self: next time, bring wax earplugs.

August 19, 2014 at 10:37 PM 1 comment

Feels Like the First Time

The surgery is complete, and things went well, mostly. Nothing ever quite goes according to plan ’round these parts.

The procedure itself was fine – kidneys are gone, little bleeding during surgery, and she has a few more scars to add to her collection.  On the downside, it appears that some of her recent coughing fits were actually a symptom of some fluid in the lungs.  She’s pretty junky all down in there, so she’ll be spending at least the night in the Pediatric Intensive Care Unit (PICU) while they do some pain management and suck out the lung gunk so she (and we) can breathe a little easier.

So we’ve come full circle, in a way.  This time last year was the first of 7 surgeries (so far) during her looong stay in the NICU, and now we’re back in the PICU for another one – visitation restrictions and all.  Of course the snazzy new Children’s Hospital it’s much nicer than the NICU…and I’m now meeting folks we know all over the place…but somehow it feels weirdly dejavuish.

Will update as things change, but so far, so good.

August 13, 2014 at 6:54 PM 3 comments

Mind the Gap

For the next stop in our guided tour of end stage renal disease, I draw your attention to the left of the carriage where you’ll see the elusive Bilateral Radical Nephrectomy.  That’s Bilateral (both sides) Radical (taking out the whole thing) Nephrectomy (removal of the kidney).  Let’s hear it for Latin!

Eliana is going into the hospital this week to have her kidneys removed. The plan is that she’ll be arriving on Tuesday the 12th, with surgery on the 13th.  Seems like almost everyone comes up with some of the same questions when they learn about the surgery, so we figured we’d just go ahead and post several questions and answers here so you have an idea of what’s going on.

Q:  Ewwwww!
A:  Yeah, but you get used to it.  Seriously.

Q:  But what will she do without kidneys?
A:  Thing is, her kidneys don’t work anyway, so for all practical purposes there will be very little change to her daily routine. She will still be on dialysis for 12 hours a day, and will still get all sorts of shots and dietary supplements to take care of everything that’s not happening in the organs today.

In fact, it’s possible that life with no kidneys will be slightly better. There’s really no good way to directly measure the actual functioning of the kidneys; all of that gets measured by looking at levels of various things in her blood. So it’s possible that her existing kidneys are doing a little bit here or there on a sporadic basis. Removing them will ensure that there’s truly nothing going on and might even make things a little more predictable.  Long story short, this is a good thing, and it’s been part of the plan all along.

Q:  So is she getting a transplant too?
A:  Nope.  This is all about taking the kidneys out – not putting one back in.  A transplant is somewhere down the line, maybe 6-12 months or so.  The doctors will let us know when they think she’s ready.

Q:  But what’s so important that they need to be taken out before the transplant?
A:  Eliana has a rare condition called Denys-Drash Syndrome, which is a very rare hiccup in the WT1 gene. Did we mention it’s rare?  This defect creates an extremely high likelihood – right around a 100% chance – that she’ll start growing things called Wilms Tumors on her kidneys (that’s where “WT” comes from). The kidneys are coming out now so they’re out before any tumors can start forming.  Things get REALLY complicated if that happens, and all other things being equal we’ve had it UP TO HERE with complications.

Q:  So if she’s not getting a transplant, what’s going into the spots where her kidneys are now?
A:  Nothing. Nada. Zip. Zero. Bupkus.  I must admit that this one had me flummoxed, as I’d somehow envisioned the kidneys as a ‘flow through’ organ where all the blood in the body goes in the top and comes out the bottom (or something like that).  With that mental picture I was envisioning that something would have to fill the gap so the vessels could all connect back up.  But really, the kidneys are on renal veins/arteries that branch off from a main vein and artery (the inferior vena cava and descending aorta, if you must know), so they can pretty much just take out the kidneys, tie off those branches, and the blood keeps going up and down in the main vessels.  For her transplant, they will actually put the new kidney in her abdominal area and attach it to different vessels…but that’s a Q&A for some other time.

Q:  Ewwwww!
A:  Uh-huh. See above.

Q:  How long will she be in the hospital?
A: Doctors estimate anywhere from 3-5 days, if all goes well.  A lot will depend on how quickly they can get her back on dialysis and renormalize all her levels – the fewer complications and the better she feels, the faster we can get her back to her routine.

Q:  Is there anything I can do?
A:  We’ll let you know if there’s anything we need locally, but most of all we’d love to have any positive thoughts you might send our way.  Every little bit helps.  We’ll be sure to update after the surgery.

August 11, 2014 at 10:42 PM 4 comments

Do you feel me?

The four of us got out to the Ned Smith Nature and Arts Festival this Saturday.  It’s become somewhat of a family tradition to head to the festival each year (not so much last year, though) so Shira can make herself a fish print t-shirt.  This year it was a turtle…but that’s really not the point of the post. 

While Amy and Shira were doing a creek walk I was crouched under a tree holding Eliana’s syringe as she burped about 30 milliliters of slightly digested formula back into the tube. Yum!  Gross for others, I’d guess, but normal for us.  While trying to be discreet, a nice little girl wandered over to see the baby.  (I’ve found that little girls like babies. Who knew?)  As her mother came over to collect her, she commented, “I know what you’re going through.  We just stopped having to tube feed our 5 year old.”

Nice.  A little empathy goes a long way when cradling a syringe of partially digested food.

But that wasn’t the weird interaction.  About a half hour later, once Eliana was FINALLY napping, another woman came over to coo over the baby.  (I’ve found that women of any age are willing to coo over just about any baby. Who knew?)  She walked up and said something like, “Your baby is sooo cute!  Is she on peritoneal dialysis by any chance?”

What?  Who would know that?  And how?  

Turns out that the very tip of Eliana’s dialysis catheter cap was sticking out from under her cute little dress.  This woman’s granddaughter had kidney disease and had been on dialysis, so she recognized both the chubby cheeks of a baby that might have a bit of excess fluid on board as well as the hardware sticking out.  Turns out that the family was also treated at Hershey Medical Center, so she knew our doctors too.  

Small world.  This is the second time we’ve had a somewhat random encounter with another patient’s family – and we even heard that a transplant family was at the event, though we didn’t end up stumbling upon them.  As crazy unique as our situation might be, it was oddly comforting to have even that brief chat with someone else who has even the most basic understanding of what we’re going through.

July 28, 2014 at 5:47 PM 1 comment

The Yearling

July 16, 2014.

Today, Eliana Tova Lerner turns one year old. 

12 months.

52 weeks.

365 days.

8760 hours.

525,600 minutes. (Cue Rent soundtrack here. Trite and obvious perhaps, but still fitting.)

So how does one measure a year in the life?

In inches, in miles, in laughter, in strife.

We’ve had a lot of each of those in the past year – perhaps more of some and not enough of others – but what matters is that we’re still here, she’s still here, and we’re all continuing to push forward together.

Hell yeah!

can-i-get-a-hell-yeah-box-sign

July 16, 2014 at 4:01 AM 3 comments

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