Monday, April 30, 2012

Fontan Talk

The meeting with Dr. Ilbawi went really well.  We got to see a lot of familiar faces from the staff and remind them that'd we would be seeing them in one short month.  He drew Olivia's current heart anatomy even including the the placement of the stent from the recent cath and then drew in the details that would be revised during the Fontan.  Mind you, he drew the entire thing anatomically correct upside down so we could review it as he drew - if that's not impressive I don't know what is!?!

A few things that were new to us:

  • The Gortex conduit that they use to hook the Inferior Vena Cava (IVC) to the Pulmonary arteries is anywhere from 3/4"-1" in diameter.  Holy smokes, that's huge!  But their thought process behind it is make it as big as possible so that they wouldn't have to go in and do a revision later when Olivia's anatomy has grown larger
  • Fenestration vs Non-Fenestration: this is something that will be decided at the end of the surgery depending on pressure readings throughout; if they are reading higher than they'd like in the new conduit and pressing on the right exterior portion of the heart, they will create a little hole to mix the blue blood with the red blood when the pressure gets too high: think little openings on the top of pot lids that allow for some steam to escape; this could naturally close on it's own if it's needed or it would get closed during a cath
  • Pacemaker placement: about 50% of HLHS kids (figures are debatable) need a pacemaker sometime in their lives to help regulate their heartbeat - but because of their new re-plumbed anatomy, they cannot make that traditional cut below the collarbone to put the pacer in. Instead Olivia would need an incision made at the base of her sternum to put the pacer in and then the leads would be positioned directly on the heart instead of the vessels.  She doesn't currently need a pacemaker, but if she did, this is how it would go
General info:
  • Post-op Medicine regimen: Lasix (dieuretics) to help her shed excess water will be needed for an undetermined period of time, 1/2 of 81mg aspirin, which she's currently on and Coumadin - for blood thinning.  There's a lot of debate between all the programs about the use of a blood thinner like Coumadin as a norm post-Fontan and Hope's team recommends it for at least the 1st year and then it's up to the parents. TBD on that one, Liv will drive that bus
  • GI Issues: A known side effect from the Fontan can be ramifications on the GI tract, either temporary or permanent along the lines of constipation (hopefully short lived) all the way to more serious life changing but manageable conditions like Celiac Disease and Crohn's.  Dr. Ibawi's team feels that their incidence rate of these side effects are much lower in the patients at Hope because of the use of Coumadin post-op but was very quick to say that if we polled Cardiologist, General Practioners and Surgeons, we'd get even splits recommending different regimens anyway - so this is a play by ear and God willing irrelevant point for Livster
  • Surgical Time & Stay: The surgery should take about four hours from IV placement to hopeful extubation at the end of the surgery but this could vary by a couple of hours depending on how much scarring Livvy has in her or if they see anything that they want to fix while they're in there...i.e. a collateral that they weren't able to get during her last cath.  Stay is still looking like 7-10 days pending her post-op drainage. She will come out with a medial and right chest tube to help with the drainage and those will be in until they're satisfied with the lack of fluid produced by her chest cavity
Holter was returned this past weekend and just awaiting those results.  All else is good to go and above all else Dr. Ilbawi stressed how well she is doing and how pleased he is with Olivia overall.  Music to a parents ears!


  1. Thank you for this great post. We haven't had this discussion, but it is wonderful to read about the Fontan. I know you all are probably nervous (I know I get nervous just thinking about it) and I will pray for your nerves and especially for an easy and uneventful recovery.

  2. Great post! We just got our Fontan scheduled for August 10. You posted a lot of info that I didn't know about the Fontan. Thank you for sharing!

    Tina B.
    Mom to Anna Grace (HRHS)