“The Fontan Talk”

So I have not updated in a while.  I am not sure why exactly.  I do update on facebook, but writing these posts is emotionally exhausting sometimes, I think that is the real reason.  Logan has had some scary symptoms, some crazy oxygen readings, and is really throwing his doctors thru a loop.  I believe that last time I updated I had mentioned that Logan’s oxygen had been drifting downwards…Well it had been in the low 70’s for some time (about 4-6 weeks.)  Dr. Patel did an echo and determined that the reason for these lower sats are the fact that he is growing venous collaterals that are taking oxygenated blood away from the lungs.  Then we had a period where his sats jumped up to +85.  This was very bizarre right after his Glenn (4 months) he wasn’t even 85%.  And to be 8 months post Glenn with a tremendous amount of venous collaterals, for his sats to be going up??? Doesn’t make any sense to me.  Then last week Logan had a period of about 5 days straight where he was sweating profusely all day. 

Sweating profusely while sleeping + child with a CHD= Mom FLIPPING OUT!!!

I of course had all these theories running thru my head about these change in sats and the sweating.  I called Dr. Patel numerous times and even asked his heart surgeon if he knew what could be happening.  Everyone determined that Logan was okay, because although he was sweating, his respiratory rate was fine and he wasn’t retracting (breathing in so hard that your ribs show.) Then just like it started the sweating stopped. 

That sweating episode was about 2 weeks ago.  Since then he has been occasionally sweaty but nothing like those few days. 

Although, I love Logan’s doctors right now, Dr. Patel, Dr. Del Nido, and Dr. Lavin, I have to vent about something.  When I call his a doctor and tell them that my son has been sweating for days and I am concerned, WHY do I have to be asked if it is hot in the house???

Seriously??? Do you think I would urgently call doctors if my child was sweating do to a hot house? I can’t even tell you how many times I was asked that. Or, here is a good one….When he is sweating is he outside?

Hmmm…..yep! I took my son outside into 90 degree whether and it is making me nervous that he is sweating….Come On???

This past Thurs.  I we saw Dr. Patel again.  Just for a clinical exam.  And once again Logan had some very bizarre oxygen reads.  Now, after 3-4 weeks of being in the 80’s he is now back to reading 71.  Dr. Patel asked the nurse to bring the machine into the room because he wanted to see with his own eyes what was going on and to try on different places (hand and foot).  On his foot he was reading 71-72 and on his hand he was 85-87.  It is just strange.  Logan has NEVER had any oxygen readings above 75-80%.  And typically after the Glenn your sats slowly drift downwards as you grow. 

And then we had “The Talk.”

The Fontan talk…..

Dr. Patel said that we need to start getting ready for the fontan.  That Logan is going to need to have the fontan sometime before it starts to get chilly.  He doesn’t know if Logan would be able to make it thru a flu season.  If Logan gets a respiratory infection he would probably really really struggle.  Typically, children have fontans at 2-4 years old.  Logan will be about 15 months old which is very young and is going to make recovery much harder. 

 I AM TERRIFIED.

I have been asking around in different CHD communities and I have yet to find anyone whose child had a fontan at such a young age.  Most children after the Glenn keep their oxygen level up for a longer period of time, they don’t typically have the abnormal collateral growth (I was told this is ‘a heterotaxy thing.’) There are many surgeons that require children to be 30 pounds before they will do the Glenn.  Logan is only 16 pounds. 

I AM TERRIFIED.

The Fontan completes his new circulation.  And this new circulation can be very hard for a little babies body to adjust to. 

I found this video about the fontan procedure.  Here they talk about it being used in HLHS (Hypoplastic Left Heart syndrome) but this is also the surgery used in Logan’s heart defect.

Just realized that I should post the video of his Glenn also.  That way you can really understand what they are trying to do.  The ultimate goal is to have the SVC (artery to head) and the IVC (artery to lower half of the body) by passing the heart and being directly connected to the pulmonary arteries.

4 thoughts on ““The Fontan Talk””

  1. Aww, Kristen. Logan really likes to do things his own way doesn’t he? I feel your fear but you have very good doctors who want Logan to thrive also. (Those ignorant questions would have made me angry, too, though!) As always, I will keep you and your precious lamb in my prayers. Love, Teresa

  2. What you wrote about the sweating makes sense for me. Rachel has these sweats too, often just before her ‘episodes’ (pulmonary artery shuts). I know it has nothing to do with room temperature – and it is very stressful for me too. I can’t imagine her having this kind of sweat all day. Just wanted you to know that I continue to follow Logan’s story and that I am praying for you. Kendra

  3. Hello, My son, Will, is also a patient of Dr del Nido’s. That is how I came across your blog. We do have a heart friend, who had her fontan at 14 months. She has a carepage http://www.carepage.com page name is WhereThereIsLifeThereIsHope

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