Monday, July 12, 2010

Doctors, round 318,297

…or so it seems.

This is Piper’s new seat at the doctors.  Anyone who insists on going to Children’s at least once a week for any extended period of time has the privilege of occupying The Chair of Shame.

We started the steroids for Piper 10 days ago.  They said it would take 10-14 days for it to get to its full effect.

And seeing as she sounded horrible on Saturday, and we haven’t made any progress, I wanted to call her pediatrician to see if they had any other ideas of things to try while we wait for our ENT appointment next Thursday.  Especially considering we have a four hour flight coming in just a couple days.  I fully anticipated leaving a message for her doctor with the nurse, and just chatting with her over the phone today.

But when the nurse proclaimed the likelihood of a significant attack when we get to altitude on the plane, a trip to the other side of town wasn’t sounding so bad.

So we went, and talked tot he doctor for a bit.  We did find out some stuff.  The best part was that her the screening test for celiac, along with her liver and pancreas function tests, came back fine.  Wahoo.  One less thing to worry about.  I also got to see her chest xrays from the last time, and saw what the radiologist said could be a slightly enlarged heart.  I saw her 13th rib (yup- she has one), and the little clip they used when they took her gallbladder.  AND we saw her teeth.  They are there!

However, everyone in the clinic is stumped about what’s causing Piper’s junkiness.  They assured me, again, that she’s not contagious, so at least we have their blessing to go on the trip, including the airplane, but more importantly, including the pool.

And since we’re now pulling at straws, and exhausting all non-invasive options first, we were also sent us upstairs to the Heart Institute to verify, one more time, that her heart is okay.  The symptoms she’s having could be related to heart failure, and although we had a fetal echo, and she had an echo right after birth, they wanted to be ultra ultra sure, which I appreciate.  We got those results tonight, and everything was perfect.  They did say, though, that they couldn’t unequivocally state that her PDA is closed, so we’ll have an ultrasound in the next couple of months.  It was open at her last echo, but again, that was when she was brand new, and being a preemie, it was totally normal.  They haven’t been able to hear it since she came home, but want to be sure that it’s closed. 

So I guess that I get to take my kid to Orlando sounding like she just may be dying.  I asked the doctor if she could write a sign for me that stated she wasn’t contagious.  You know, to hang around her neck.  Highlighted, in bold.  I’m glad that she’s not in any kind of distress, and it’s not bothering her too much (although she gets MAD at the coughs every once in a while- who’d blame her??).

Wait. and. see.

I hate that approach.


  1. Ugh, sorry Amiee, I know how horrible it must be to not know for sure what's going on. Lucas has an open PDA as well, it is not causing any problems and won't be seeing the cardiologist until next year. Hopefully they'll get this figured out! Hugs.

  2. WOW!!! that was a full plate! I am not excited about the wait and see either!! I am glad to hear things are looking ok...have a great time in FL...and be safe...smiles

  3. Have you seen a pulminologist? Aubrey gets junky too and we just have to up her nebulizers. Worth looking into at least.

  4. Ugh, so sorry for Piper girl! Hope your trip is wonderful and she clears up nicely to enjoy it.

  5. Ugh, I hate the wait and see too. I hope she sounds better soon!