Most people follow Logan on Facebook and they know that we have indeed been home from the Fontan surgery since July. It went well. We ended up only being inpatient for 2 weeks, which, for this big of a surgery is amazing for Logan. Ironically, he came home with much lower sats than he went in with. Typically a Fontan surgery increases your sats, but for Logan it lowered it. Dr. Pedro Del Nido decided to do a fenestrated Lateral Tunnel Fontan. Pedro put a larger than normal fenestration in to make sure that Logan could get out of the hospital quickly. Many times kids drain fluid thru chest tubes for days to weeks to months after a Fontan, but having the large fenestration reduced the risk of pleural effusions, however it left him with lower sats than pre-fontan. The fenestration is essentially an ASD to allow some blue/red blood mixing if his pressures get high (this is called shunting.) This residual shunting made Logan’s sats acutally level out at 68-72% once we got home. This is obviously not exceptable and we went around and around and back and forth about what to do and if we should cath him. We decided to be conservative first and try oxygen at home (to vasodiatlate the pulmonary artery) and then we experimented with Sildenafil as well. His pulmonary arteries were in fact reactive to both and we are now on around the clock Sildenafil (Viagra) and his oxygen saturations are now 78-82%. This is much better. Ideally, everyone would like Logan to be 85%, but, it just isn’t happening.
I have not blogged in a long time. There were a lot of mixed emotions about the Fontan and coming home from it. For 3 years now I have been told that for Logan to live he would need a Fontan. I have been anticipating this Fontan for so very long. The past 3 years have been excruciatingly hard and overwhelming, to be done with the Fontan now…..it feels wonderful! He isn’t out of the woods, we still need to get his O2 levels up, this spring they will attempt to close the fenestion in the cath lab. If his pressures are too high and they are not able to, he will be stuck with these sats for another 1-2 years, until they try again.
Since we have been home and a million bricks have been lifted off my shoulders I have disconnected from this blog, FB, my phone, and I have been just trying to enjoy my family.
Thank you for being patient with my updates, I really needed a break from all this for the time being. I do however post more on Facebook and if you would like to follow not only Logan but other kids like him, please look up The Heterotaxy Network on Facebook.
~Kristen
Heterotaxy Syndrome 