Cinder-Livvy

Cinder-Livvy

Tuesday, May 31, 2011

Thank you!

This weekend a family wedding gave us the opportunity to introduce Olivia to many extended family members and out of town friends that she'd never met before.  Just because she hadn't met them didn't mean that they didn't know all about her.  So many people recalled their most favorite blog entries, others knew all sorts of her little bio facts and everyone was able to see firsthand just so well our girl is doing right now.  We clearly felt the love and support that you have been virtually wishing us dating back to Olivia's diagnosis in utero and I just wanted to again voice my appreciation for all of the well wishes.  I do apologize for "No Nap Olivia" I had really hoped that we could get Little Miss Missy out to smile and bat her beautiful eyes at all her faithful and loyal admirer - but no dice there.

Here's some FAQ's just to give the highlight or overview of our current status:
Q: What's the timeline for Olivia's next surgery?
A: We were told early on that she was on target around age 2 - we have another cardiology appointment in July that will be complete with an echo and that might require an additional heart cath so we should have a more definitive game plan after that

Q: How many meds is Olivia currently on?
A: She's on .5ml of Enalapril (BP medication) right now along with half a baby aspirin daily and then two vitamins

Q: Are the doctors just thrilled with her progress?
A: Yes, they are very pleased with how she's doing.  Mommy is so pleased and appreciative but always looking for a physiological explanation for Olivia's current success - any and all information in the way of these HLHS babies would be helpful to help future cases

Q: What sort of extra care does Olivia require?
A: Not much at this point (knock on wood) - we like to avoid anyone that may be sick or in contact with anyone who's currently sick to keep germs to a minimum, now during the summer she will require a little extra attention when we're outdoors to make sure she doesn't overheat, and as is our norm watching for any signs of cardiac distress

Q: Last but certainly not least - What's Olivia's long term prognosis?
A: That is a really hard question and we don't have an answer for it.  Our life could take a dramatic turn after the Fontan - short term or long term. She has done so well through the first two surgeries that you'd like to think we'd expect the same this next go around but that's just not the way things work.  The last surgery deals with the blood flow to the lower half of the body and there are complications and life altering changes that could potentially be a result from the new circulation.  Even past the Fontan; Olivia will always have half a heart and that's just not the norm nor are there decades worth of history to help educate the doctors treating these patients.  They're still writing the user manual so to speak.  So all we can do is hope for the best and live each day that we have to the fullest.

Thank you all again!
Much Love,
Lisa

No comments:

Post a Comment