Monday, September 17, 2012

Sprung from Room 2052!

If you're looking for Olivia today, she's back in the Ville where she belongs.  Yesterday's echo showed slight, like teeny tiny improvement from her admission echo on the 12th; so the doctors felt cautiously optimistic that she could be discharged.  The most important thing is the change from IV meds to oral meds didn't result in any accumulation of fluid which is what started this whole vicious cycle to start.  The exact words of the doctor yesterday was that "while there's been slight improvement in function, Olivia still has a long road to recovery".  Ideally speaking, we keep her from getting all hyper and running around for the next few weeks until she has another echo to confirm that function is continuing to improve and keep the crying to a minimum because of the additional work it puts on the heart.  As the doctor said since he has four daughters, "good luck".

The official discharge paperwork has no physical or dietary restrictions on there and just a note to follow up with cardiology in a couple of weeks.  At least there's a line in there about Olivia's ongoing heart failure (I'm being glib).  It truly was a strange and surreal hospital stay to say the least.  There was an underlying panic on the day of admission once they reviewed the echo and again when the BNP bloodwork showed a level of serious heart failure but you could feel the relaxation come in as soon as lasix were on board and she started to purge all the built up fluid.  All of that still doesn't change the outcome, Olivia is technically still in heart failure and it's going to be a long road trying to reverse it and hopefully get her function to at least where it was on August 3rd when she had her first Post-Fontan echo.  I remarked yesterday how bizarre that this hospitalization was the most critical of her life, even moreso than the recoveries from each surgery.

The new medicine regimen to help restore order is the following:

  • Lasix Pill - 2x daily
  • Spirolactone - 2x daily (kind of a wuss dieuretic, but it keeps electrolytes in check alongside lasix)
  • Digoxin - 2x daily (to help improve heart function overall)
  • Enalapril - 2x daily (blood pressure med, in Liv's case to help with function)
  • Prevacid - 1x daily the heart failure was likely causing some reflux, this will probably be one of the first meds to go
  • Aspirin - 1x daily (normal blood thinner)
  • Coumadin - 1x daily (strong blood thinner, specifically for use to reduce the likelihood that Olivia has any issues with blood clots for the first year post Fontan)
  • Daily Multi Vitamin
It looks like a lot but now that Olivia takes all of these in pill form, it's really not bad.  Some of the daily precautions we've now set in place to make sure the tiniest bit of fluid accumulation are:
  • Noting all wet diapers on chart (yes potty training boot camp has to happen ASAP)
  • Recording all fluid intake
  • Daily weigh ins
It seemed like Olivia was more than happy to sleep in her own bed last night, she was passed out when I left this morning sprawled out to occupy as much square footage as she could.  Super cute!

1 comment:

  1. First off, glad she's on the road to recovery. My daughter is post Fontan, 4 yrs old and 41 lbs but I was told(by the pharmacist) she still isn't big enough for the Enalapril in pill form. We're still doing 3.5mls 2x/day. Would you mind sharing her dosage? Ours is compounded 1mg/ml & he says the smallest pill is 5mg. It would be great if she could just pop a pill from a local walgreens vs getting the syrup from a compounding pharmacy.------brittany