Follow Up from 8/3 Card Appointment

Phew...glad that's over

Olivia, aka Sherlock was hip to what was going on about 10 minutes into the car ride. Actually it really started in the middle of the night when she refused to sleep.  But shortly into the car ride started the pitiful "Hoooommmmmme" chant and when that didn't work, then it was the dramatic act of self induced dry heaving.  We nipped that in the bud ASAP and carried on.  By the time she saw the parking garage the tears started up and it was all she could do not to jump out of our arms and run back to the car.

Vitals as always are a chore even when I'm the one doing the readings.  We try to educate the staff to ignore her as much as possible and touch only as necessary - direct eye contact would pretty much be a no-no too. You know, treat Olivia with the worst social manners ever and that seems to help in these settings.  To get the echo done, Brian had to lay next to Liv the entire time with her fluffy bunny pillow pal, mini Minnie, baby Elmo, a blanket, her burp cloth, a new Minnie pillow pal that was a gift of the clinic and just about anything else you can imagine we brought that would fit on the exam table.  Eventually she drifted off to sleep in the dark room to the sound of her nighttime music on the ipod and so did Brian.

Our card went off to read the echo while I caught up on emails and the other two napped. She looks good, function is definitely better than the Post-Fontan discharge echo but she's not where she was before the Fontan.  I consider this a mixed bag.  I like improvement, but would have preferred to be back to where she was before the surgery.  On a plus side, her holter test was perfect.  Not one single skipped beat was detected so we got to discontinue the Aldactone (dieuretic) and Amioradone (arrhythmia drug).  We need to go back in two months to get an event monitor and make sure that once the anti-arrhythmia drug is out of her system that she is still holding her own.  Liv's INR was a little high at 2.5 so we're back down to 1/2 of a Coumadin tablet daily instead of the variable schedule before.

If all goes well in two months she'll be on the six months to a year track between visits.  It seems kind of scary actually.  As much of a pain as these visits are becoming (paired with lovely vomit on the car ride back), I do like the gut check that the medical professionals agree she really is as healthy as she looks all things considered.