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 Leave a 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

The Baby’s Off Button

Why didn’t anyone tell me about the off button until now? You learn something new every day, but not every day is what you learn worth getting out of bed for. Today it was.

We had to skip library storytime because Eliana had an appointment at feeding clinic. Turns out it was worth it because I learned about stopping her gag reflex by tapping on the spot above her upper lip. Now let’s see if we can get some baby food into this kid!

Two weeks ago when Shira and I took Eliana to her first storytime, she loved it. She was mesmerized. She waved when the librarian sang the bye-bye song.

It was Eliana’s first non-medical outing, and one of the things that made it so cool was that—nervous as I was about taking her out to what I knew would be an activity with other infants her age who would be developmentally light years ahead—as I walked in the room I saw a little boy in a wheelchair and breathed a sigh of relief that she wasn’t the only “special” one there.

I was bummed that we missed another storytime because of the appointment, but it was worth it. Also, as we were sitting on the floor of the waiting room playing with one of those cool wooden boxes with the abacus thingees on the sides and top, who should come in but our new friends from storytime? We commiserated over missing it today and chatted for a few minutes before the appointment. Yep, definitely a day worth getting out of bed for.

June 24, 2014 at 8:10 PM Leave a comment

So how was YOUR day?

A little before 9 am, Amy experienced what she described as her “first moment of terror” with Eliana’s treatment.  Why?  Because that was the moment our nurse cut clear through Eliana’s dialysis catheter.

Oh crap.

Two tiny little problems with that.  First, an open catheter means a wide highway for bacteria to run right up into her peritoneum and set up shop.  She’s already had peritonitis twice, and it’s no fun.

Second, too much damage to the catheter could mean it has to be surgically removed and a new one reinserted – easily a week in the hospital and yet ANOTHER surgery to endure.

But our vast 6 months of experience kicked in (well…Amy’s experience – I was at work and provided little more than moral support) and she HANDLED IT!  Yeah she did!

Amy and the nurse (no names, please) quickly grabbed the emergency clamp and shut off the line.  Amy was on the phone to nephrology immediately to alert them that the Lerners were coming to the hospital, grabbed snacks, an overnight bag, and formula for the baby, and was in the car to Hershey in less than 30 minutes.  At 8:59 I received a text that said “Heading to Hershey. <Nurse> cut the PD cath. So mad; apologized profusely.”

Then at 10:49 a second text: “Cath fixed. Getting antibiotics.”  I barely had enough time to start thinking about contingency plans for after school pickup, possible backup meeting coverage, hospital overnights and all the other fun stuff that comes along with an admission, and the problem was already fixed.  Instead of facing another major surgery they were home by lunchtime.

What lessons do I take from this experience?

(1) When we say “no scissors around the tubes” we really, really, REALLY mean it.  Let’s just say I don’t think that mistake will happen a second time.

(2) Systems work.  We’ve trooped off to the hospital enough times that we’re getting unfortunately good at it.  Knowing what to pack (always take snacks/drinks, and an overnight bag is a good precaution), how to communicate (cell phones/texting doesn’t work in the ER, but you can email on the WiFi) and who to call (saved hours by going right to nephrology instead of the ER) will go a long way towards a successful visit.

(3) Preparation helps Luck.  Surgery was avoided because the cut left enough tube (maybe 4 inches) to attach a new connector set.  That’s probably because the tube was taped in a loop, like it’s supposed to be. No loop under the tape and the result might have been different.

(4) For those who mock, this is the reason I’m Mr. Worst Case Scenario, thank you very much. The Worst doesn’t happen very often (otherwise it would be The Normal), but when you’re prepared you’ll be home by lunchtime.

Thank you, and good night.

 

June 2, 2014 at 10:03 PM 1 comment

Let the Huh Continue

P1050991_Fotor

This is my daughter who can’t roll over yet. She can’t roll over, but she managed to get from the play mat over to the loveseat…

P1050985_Fotor

I’m not sure how she got that far while I was mopping the floor, but it wasn’t by rolling over. She can’t roll over yet, but she managed to take the swab cap off her central line … while it was tucked under her onesie.

She can’t roll over, but she disconnected her feeding tube during naptime. I’m still not sure how she did that without pulling out the whole G tube, because you have to align the extension to disconnect it, a pretty intricate move.

She can’t roll over, but she has lots of skills a normal baby doesn’t. Since she was born, she’s been a mystery. Doctors in the NICU would say, “we’re not sure why she’s doing that.” While one big mystery has been solved–she has a rare syndrome that caused her kidney failure–she’s still full of mystery, or things that make you go “huh.” Like what’s up with the rash on her chest that no one can figure out how to alleviate? And how did she get several feet across the floor when I wasn’t looking?

May 27, 2014 at 6:36 PM 1 comment

The Clubhouse News, Mother’s Day Edition

The Clubhouse News – 05-11-14

May 11, 2014 at 2:42 PM Leave a comment

Would you tell me, please, which way I ought to go from here …

I’d like to say I’m getting the hang of taking care of Eliana, but no. Like with any young child, things are constantly changing. But with her, it’s medications, new doctors, troubles with insurance … oh yeah, and some of that normal baby stuff like teething, pooping at the most inconvenient time, napping haphazardly.

Shira and I have been playing an Alice in Wonderland game on our tablets, a point and click adventure where you unlock doors and solve riddles from the White Rabbit’s house to the Red Queen’s castle.

I’m constantly amazed by the new tricks and things I learn along the way. And not only climbing a tree and flying a Da Vinci style one-man helicopter to the White Queen’s castle, but in real life too. We decided early on to share Eliana’s story, and we were overwhelmed by the well wishers and support we got from all over. Taking care all the time can still be isolating, though. She has such a rare disease (1 of about 250 ever diagnosed worldwide) and it’s unusual for a child as young as she is to be on dialysis. It seemed pointless to even look for peers, and I had already talked to one mom whose child had a kidney transplant and goes to the same doctor.

Once we were settled in at home, I had more time to shmooze with other moms. I started with Parent to Parent, an organization that matches families with another family with a similar experience. I joined a facebook group for tube feeders (or the parents thereof) because that’s a much more common treatment. Then I found some kidney disease and dialysis groups–there are tons on facebook and beyond, one of the most famous with the great name I Hate Dialysis.

Like Alice, I’m falling deeper and deeper down the rabbit hole and things are getting curiouser and curiouser. I joined a few facebook groups for people with kidney disease and those on dialysis, but because of the sensitive nature, many of the public groups are more like clearinghouses of information about kidneys and dialysis. I poked around on a few of the public groups and found a group for parents of kids with kidney disease. I said some magic words and *poof* I was ushered into a super-secret group for parents of kids with Eliana’s diagnosis and two other similar ones. It’s always tea time, and everyone is mad.

April 30, 2014 at 2:18 PM 2 comments

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