Helping with Vincent

Our son was born August 19th we knew had tof but we did not know about TAPVR. We found out the day he was born he had tapvr. When he was born we thought hed be in hopital around a month then we would be able to take him home. Well because of combination he had to have his first surgury oct 9th. was going to be sooner but he had liver issues. Surgury one was estimated 6 to 8 hours it went for 18 1/2 hours he had to have a conduit put in he also has an abnormal cormary artery he had to come off on ecmo whih is like long term bypass most kids only are on it for couple days he was on it for 2 weeks
then 2 weeks after that we had the scariest call our lives. He had went into septis shock where whole body starts shutting down
The doctors told us to get over there now because he wasnt going to live through the night his kidneys took till around december to finally start working again normally. Then we found out he had muscle build up around the area they attached the veins so december 11th he had to have another open heart surgury to remove the muscle that surgry only went for 4 hours and he came off ok then. Next hurdle was his breathing tube he had it in so long it took 3 tries to get it out and the docotrs didnt even want to try a 3rd they wanted trach but we opted againt it and wanted to ty at least one more time. he finally came off and was able to stay off. At 7 months old and one day he got to come home for the first time ever. He just had his one week check up and said within the next 2 months he will need a conduit he has replaced
he has a conduit in that wont grow with him so hell need it replaced when he grows the conduit replaces pulminary valve

May 14th update he had his 3rd open heart surgury lasted about 6 hours.  He had blockage in his left pulmonary vein and replaced conduit and valve took about six hours.

Latest updates he has pneumonia and flu both he has been hospitalized for the 13th time since his initial release 3 months ago. He has had a double lung collapse and just is quite sick
So Vincent had another stomach surgury.  He's doing great though..  Hopefully coming home soon been in the hospital for  2 months this go.  No more oxygen. 

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Giuseppe Lucchese 
Loves Park, IL
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