Fontan

[jssclngmr]

My daughter Brookelle has HLHS. Right now she is doing excellant. She hasn't had to be on oxygen for quite a few months now. She just turned 2 in January and her cardiologist said that she needs to get bigger for her next surgery and if she keeps doing as well as she is then they will wait till next year to do the Fontan. I was wondering on other parents experiences with the fontan. How old was your child when they got the Fontan? Were they needing oxygen before the Fontan or was it more elective on the doctor's part (if that makes sense)? We were told she would need surgery if her oxygen gets lower (she is at 75% or above right now) or if she is a certain age they will elect to do it. I have heard that the Fontan is the hardest for kids because they are older and understand more? Any insight on that? Also how long is the stay in the hospital after the Fontan without complications? Thanks for helping me with my questions.

[Alli and Kyle Hicken]

I have many of those same questions myself! My son Grant has HLHS + a bunch of other cardiac defects and will turn 2 in a few weeks. We had a cardiology check a few weeks ago and were told that it is time to prepare for Grant's Fontan. I thought that he was too young and too small (he is almost 28 lbs right now), but I guess I was wrong! Grant has been showing signs of decline (lower sats...especially when playing hard or after eating, wears out easily, more blue, etc.) so we are hoping to schedule his surgery for April or May (once some of the illness risk at the hospital is reduced). We were not sent home on full time oxygen, which was pretty unusual to me considering that most of the families we know have had their kids on O2 before the Fontan. We just give Grant blowby when he is playing hard and needs an extra boost. Our cardiologist told us that the post Fontan surgical recovery stay is rather "unpredicatable" (his words) and so I don't know how to plan for it. We have seen families go home in under 10 days and we have seen families who had much longer stays initially. I am also concerned about some of the complications from the Fontan which can make for many additional trips back to the hospital, but it is so different for every kid! Feel free to read along on Grant's blog (grantmeaheart.blogspot.com) and you can get an idea of what our experience is leading up to the Fontan (though because of some of Grant's other complications, we are unsure at this point if he will be a candidate for the Fontan). I hope that some other families reply to this post since we are also anxious to learn about other's experiences!

Alli