Today M and I took Tiptoe up to Children’s National Medical Center for her pre-op.  We left early (though of course: not as early as we’d planned).  The troupe gathered to say their goodbyes; a few tears were shed.  We loaded everything up in the car and got on the road.

It’s been a while since I posted here about what’s going on with the lass—here’s a refresher.  Tiptoe has a condition called hypoplastic left heart syndrome.  That means that her heart is working on a single ventricle and a single atrium.  She’s undergone two open heart surgeries already to adjust her physiology to keep her alive.  This third operation is meant to put her heart and vascular system into a state that will allow her to grow up and provide sufficient oxygen to the rest of her body.

We arrived at the hospital (miraculously) in time for our appointment.  Children’s National is waaaay different from UVA (which is where her last surgeries were done).  It’s bigger, for one; the non-cardiology staff aren’t quite as personable.  And it’s in the middle of a somewhat decaying urban area, where UVA was in the middle of a snazzy college campus.  But we found the cardiology staff very warm and knowledgeable; they exude confidence (and inspire it, too!)

First stop for the morning was to run some diagnostics on Tiptoe—blood pressure, O2 saturation, temperature, heart rate, ekg…

There were lots of places to go, and lots of explaining and tests to be done.  I feel like we answered the same questions four or five times—you’d think that in this day of cloud computing, someone would have had the good idea to integrate the information gathering into a single instance, and thus cut down on discrepancies and misinformation (not to mention mistakes from data handling).  In any case, the worst part was taking her labs (as expected).  They had to draw lots of blood from that poor little girl.  She actually did better this time than I’ve ever seen her do, while conscious.  Usually, she’s a mean ol’ bear when it comes to getting stuck.

After all was done, we headed up to cardiology to talk to the surgeon.  That resulted in lots of waiting for the surgeon.  While we were waiting, there was an earthquake.

I am not kidding.  An earthquake.  In Washington DC.

They evacuated the hospital of all non-patients and non-essential personnel.  Us too.

We had brought along some toys for Tiptoe to play with, and good thing—those Little Ponies saw a LOT of action today.  We found a shady spot and waited for the all clear.  It was a beautiful day to be outside, atypical of DC August days: low humidity, low heat, a nice breeze.  We stayed outside for about forty-five minutes, and went back in to wait for the surgeon. 

We waited another two hours.  Tiptoe was absolutely fantastic, even without a nap.  She’s a real charmer and delight when she’s got all the attention (which she had). 

When Dr. Jonas finally was able to meet with us, he went over the surgery.  They will need to put her on a heart-lung machine.  During the surgery, the heart-lung machine will take over the heart’s operation of pumping blood to oxygenate the rest of her body.   They’ll disconnect the inferior vena cava (the vessel that brings blood back from the lower body to the heart) from the heart, and reattach it to the pulmonary artery using a gortex tube.  This will take blood from her lower body directly to her lungs. 

Her pulmonary artery is narrow, but Dr. Jonas feels that it would be better to widen it using a catheterization procedure than doing it during the open heart surgery.  He said that they would likely also open the wall between her atriums, but didn’t seem to think that it was a strictly needful thing to do.

The other big thing is that they postponed Tiptoe’s surgery until Thursday—another child has an emergency and needed surgery more.