Ok where to start. My son is now 4. He has HLHS. Hes had the completed staged surgeries which turned into 4 open heart surgeries. It has been well over a year since the Fontan was done. they said that his sat levels would go up to high 90's. He is still in the mid 80's if we are lucky. HE does have developmental delays. He does pt, ot, an speech therapy twice a week. He was on lovenox injections due to his pulm. artery was 100% blocked. His left lung is shut down. Has been for over 2 years. Hes got clotting issues. after his last surgery his nurse o'd him on fentnal and ativan we lost him. they were able to bring him back but took many hours to get him stable 8 1/2 to be exact. THey have ordered a sleep study be done to figure out why he wakes so much through the night not able to breathe. the episodes seem to get worse an last longer. He is having really bad dizzy spells where he falls all the time. hes had some face plants into the floor, walls. Hes now wearing a helmet. They have also ordered a 48 hour EEG. he has uscle joint pain cant walk very long without needing to be carried. His blood pressure is high. Ive had his eyes and hearing checked his vision is 20-30. hes a wopping 30 lbs soaking wet. tiny for his age. he eats well but has trouble gaining weight. he also has severe reflux. Hes currently on, oxygen at night an through day as needed, asprin, captopril, axid, prevacid, zofran, milk of mag. also can have albuterol treatments up to every 4 hours but i donot like giving him those as it makes his heart race. so many things going on with him i just dont get it. HAs anyone else's child had issues with seizures and low sats after all surgeries have been completed? and sleeping disorder?? he gets infection after infection the winter time is awful as he catches every little thing. even in the summer he ends up with strep throat. i even switch his tooth brush every 2 weeks, he doesnt drink off of anyone. poor kid... any ideas on what i can do...anything at all i would appreciate...
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