Jill Callister
03-18-2009, 08:45 AM
I am fairly new to this group so I'll give a brief background, sorry it is so lengthy. Ayden was diagnosed with multiple heart defects - the main one being HLHS when he was 7 weeks old. He was a very sick baby by the time it was discovered and the doctors weren't very hopeful. He had 3 major surgeries his first year and has been doing great. After having the Glenn Dr. Hawkins commented that he had no idea how he would perform a Fontan on him due to his unique anatomy. Last summer I brought Ayden in for an unplanned visit to the cardiologist. All the sudden Ayden was not himself. He couldn't keep up with his siblings, and it was a struggle to go up the stairs. Everything looked great at the appt. until we had him climb the stairs and test his oxygen. His sats were in the 50's so they decided we needed to move forward with the Fontan soon. Unfortunately it was canceled since it was way to risky. He had an AV Fistula done in November to buy him time in hopes that they would eventually be able to perform a Fontan. It took 4-6 weeks to see improvements but he is doing much better. However, he complains of having pain in his left hand now (the same side they performed the fistula on). I'm asumming it has to do with circulation but i'm not sure. So now to my questions has anyone had an AV Fistula, did it cause pain in the hand, how long did it last?