The Clubhouse News

The Clubhouse News – 03-25-14

March 25, 2014 at 8:21 PM 2 comments

This Week’s Clubhouse News

The Clubhouse News – 03-08-14

March 10, 2014 at 9:51 AM Leave a comment

The Clubhouse News

Shira’s favorite spot in the house is a carpeted nook to access the attic that she calls the Clubhouse. There’s official membership documents, maps and directions, and now a newsletter.

The Clubhouse News – 02-22-14

February 25, 2014 at 1:40 PM 2 comments

You’ve Just Been Hanked

Since Eliana has been home from the NICU we’ve had 16 hours a day of nursing help (when the nurses actually get here…but that’s another post).  But last week we got a letter telling us that our hours were going to be substantially reduced.  We could fight it, but had to get the paperwork in within 10 days in order to keep these hours while we fight the decision.

Of course any sort of insurance stuff is freakishly complicated, so I broke out my best Hank and went to work.  Read and re-read the letter. Research online.  Talk to the nursing company. Contact a pro bono service that specializes in health law and insurance matters.  Then…make the call.

When people ask me technical questions I don’t like to just give the answer — I like to cite chapter and verse. If I look it up I know I’m right, and if I can give you a citation it’s hard for you to think that I don’t know what I’m talking about.

The first time Ms. Customer Service said “I don’t think you can do that” I convinced her to check with someone else who could tell her I was right. But the second time, when she confidently told me “you can’t do that at this stage of the process” I couldn’t hold back.

Some parents might have trusted her and walked away.  Others might have yelled that they knew they were right.  I, however, patiently read her the URL of the company’s website that recited what I had just told her.  She’d been Hanked.

Been doing that a lot recently…

February 16, 2014 at 9:11 AM 2 comments

A Really Big Kiss

Simple Valentine’s Day this year.  I got my Valentine a big ol’ Kiss!

big kiss-2

But what do you do with such a big Kiss?

Duh.

A big Kiss deserves a really big peanut butter cookie.

big cookie-2

Yum.

February 15, 2014 at 6:00 PM 1 comment

All that and a bucket of chicken

The surgery was finally completed after about 4 hours – the time they told us it would take – and the surgeon came out to tell us everything went pretty well. Yay.

And apparently we had enough frequent flier miles that they gave us a free surgical upgrade. Along with the fundoplication (still love that word) and G-tube, they went ahead and stitched up her umbilical hernia while they were there.  So now we won’t get to see her bellybutton blow up like a little balloon when she cries.  Oh well…you win some, you lose some.

But overall, things are good.  She’s going to be on some pain meds for awhile (she does have a bellybutton to chest incision, after all) and probably won’t eat for the next 48 hours or so.  Saturday will probably see her feeding restarted, and we’ll get to dialysis as necessary.  Probably looking at 4-5 days or so, but it could be worse, right?

January 30, 2014 at 11:11 PM 2 comments

We’re Baaaaack!

So here we are, back at the Hershey Medical Center, in the Children’s Hospital, awaiting Eliana’s G-tube surgery.  They’re a little late (I mean…really…it is a hospital so why wouldn’t they be?). So we’ve got some time on our hands and I figured what better than to live blog the morning.  Some random thoughts, in no particular order:

I’m typing this on a wireless keyboard synced to a 50 inch TV hanging on the wall in her pre-op room.  Pretty snazzy, huh?  And we’re not even in her overnight room.  My hopes are up, so I’m expecting a stocked kitchenette and DVD library along with a king sized bed.

** They gave Eliana a teeny-tiny gown that ties in the front.  Guess babies don’t get out of the crazy hospital gown business.

** She also got a pair of fuzzy booties, just like adults.  They have grippy rubber treads on the bottom too.  Apparently they’ve had trouble with 6 month old kids slipping as they’ve tried to run out of the room?

** Part of her surgery is called a Nissen Fundoplication (can’t easily link from here so look it up yourself).  How cool is the word Fundoplication?  As Dave Barry might say…that would be a good name for a rock band.

** If I’d just gone over 12 hours without food I bet I’d be even grumpier than Eliana is right now.

** I think I just became one of those people who blogs everything. Not sure if I like it.

** Ray Charles still works his magic on a grumpy baby.  Along with the blogging we’ve called up YouTube to listen to some of Mr. Charles’s greatest hits and it calmed her down just like at home.  We should try some BB King; if anyone should have the blues it would be her.

** When the surgery is over they’ll track us down with…wait for it…a pager. Cool.

Alrighty…OR nurses are here so we’ll be off to answer some more questions.

January 30, 2014 at 1:10 PM 3 comments

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