Archive for June, 2014

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

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