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One week from Fontan

  • 1.  One week from Fontan

    Posted 10-09-2017 13:42
    Hello all -

    We are one week away from my son's Fontan. He is Double Inlet Left Ventricle and is 10 years old. We have delayed the Fontan for a lot of years since he's been so stable, both his heart function and sats. He has done really well at the Glenn, so we didn't want to move forward with the Fontan just to move forward. In the last year or so he has showed signs of outgrowing his Glenn (lower sats during exercise, more winded, etc.) so we will be having his Fontan next Monday at Seattle Children's. I am anxious, excited, nauseous, ready, pretty much an emotional mess ;)

    I'd love 1) any positive Fontan stories and 2) experiences with older Fontans and how their recovery was.

    Thank you!


    Jesse Smith
    Puyallup WA
    (253) 864-0154

  • 2.  RE: One week from Fontan

    Posted 10-12-2017 09:16

    We have not been through the Fontan. But, I hope some others reach out to you and share. I'm sending lots of love and hugs to you. I know that the emotional stress that comes along with another OHS is tough. Hang in there!

    Andrea Baer
    Director of Patient Advocacy
    Mended Hearts/Mended Little Hearts
    Grapeville PA
    Director of Patient Advocacy

  • 3.  RE: One week from Fontan

    Posted 10-13-2017 08:26
    Wow, I thought my son had successfully waited for his Fontan until he was older.  Yours has made it longer.  My son is HRHS so we are right side.  He had his fontan a month before his 6th birthday.  I thought that was awesome.  You guys have gone to 10.

    My son had a good BT shunt experience.  He had a not so good gleen recovery.  So we were not sure what ​to expect with fontan. I have to say it does get harder every time to watch them go to the OR but he handeled it well.  We toured the facility.  Spoke with child life and all doctors.  The middle of the night the first night after he was in some pain but otherwise it went really well.  We stayed about a week.  Just before we could go home he had to have a bowel movement and that was really hard to go through with him.  He hadn't gone in days and it hurt a lot to go the first time.  Those are the 2 times I can remember as the worst and honestly that was nothing compared to gleen for us.

    My son is 12 now.  Fontan is doing great.  He swims on a swim team and very busy with band and piano.

    I wish you guys the best on Monday.

    Candida Schendel
    Montgomery Tx

  • 4.  RE: One week from Fontan

    Posted 10-24-2017 02:47

    Hello Jesse.  My son had his Fontan 7-6-2009 at Cedars-Sinai when he was 4.5 years old.  It was a slightly bumpy recovery due to plural effusion and low potassium--had IV potassium which stings but did not increase levels enough so he had oral potassium which smells like rotten eggs but got his levels high enough. He was on the pediatric floor day 2 post-Fontan and his nurses got him walking around the floor the first day post-Fontan. Cedars-Sinai staff told to plan on being in the hospital 2-4 weeks after The Fontan for recovery.  Cedars-Sinai staff are amazing, his nurses showed him how to flush his IV after a few days.

    The first thing I remember about seeing him in the PICU after The Fontan was how pink he is,,,that was and still is amazing to see.  All in all,his Fontan was un-eventful, only  had the low potassium and the plural effision.  He remembers playing mario kart on the game station that we checked out to have in his room and many trips in the red wagon to the outside level to look at the waterfall sculptures and listen to the birds.

    We were home day 10 post-Fontan, sent home with 2 diuretics which he took for a few weeks.  Before The Fontan his sats were 80's, currently--8 years post-Fontan--his sats are low to mid 90's.  He has more energy then he ever did after The Glenn.  He has learned to listen to his body and take breaks when he feels like he pushed himself too hard.

    Hope your son's Fontan goes well, amazing that he was able to wait until 10 to have The Fontan.  Keep us posted.  **heart hugs**

    Yvonne, heart mom to Bryce (complex single ventricle and other CHD's, Fontan 7-6-2009, Camp del Corazon-camper since 2014)