Stefan's HLHS Medical Fund

Stefan was born with Hypoplastic left Heart syndrome. He had three surgeries that where essential for his survival. All three surgeries where out of network and not covered by my husbands insurance. We have low income and cannot afford to pay out of pocket. Here is Stefans ❤ story : Stefan was born 12/13/2011 with hypoplastic left heart syndrome (HLHS) a severe congenital heart defect in which the left side of the heart is underdeveloped. He needed to undergo a series of three open heart surgeries to repair the defect.  Stefan’s 1st surgery was at 3 days old, after the first surgery Stefan had a NG tube for feedings, He had muscle weakness threw out his whole body and trouble passing BMs and extremely low immunity, when he gets sick it's drastically worse (dangerous) and last week's longer then normal . Stefan stayed in the hospital till he was 1 ½ months old.  He took 1 /4 of low dose Asprin, and Lasik medication. Upon Stefan leaving the hospital my husband and I took Stefan for his 1st check up at the Dr. where they notice that Stefan had tibial torsion as well as torticollis. The Dr.’s recommended that Stefan receives physical therapy to help with tortoicollis and tibial torsion, as well as a nurse to monitor oxygen, heart rate and weight, and a nutritionist to help Stefan with passing BM.  When Stefan was 7 months old he went in for a catheterization to see how his heart looked before surgery. Stefan’s oxygen decreased drastically and needed to have his 2nd surgery 7/15/2012. He was on oxygen. Stefan’s hospital stay was 3 ½ weeks. When leaving the hospital Stefan caught an infection after surgery which prolonged his hospital stay for a half week. After Stefan left the hospital the hospital requested that Stefan have Occupational therapy & Speech therapy, Feeding therapy & a nutritionist as well. The hospital took Stefan off the aspirin & increased his Lasik dose. Stefan had a catheterization before his 3rd surgery and had a bad allergic reaction to a sedative midazolam. On 11/15/2015-12/03/2015 was the duration of Stefans 3rd & final surgery. I Stefans mom Stayed with Stefan for his 2nd and 3rd surgery. Stefan had a bed side nurse with him as well. He was restrained due to the fact that he pulled out his oxygen after surgery and wasnt responding well and tried to pull out his main line. He was then put on a ventilator which was taken off a few hours after his surgery. He was also on a Nebulizer, NG tubes for feedings, three chest tubes for drainage. After surgery Stefan had a blood clot, collapsed/Raised lung as well as fluid on his lung and a surgical cough. Shortly after that he had a Psychological evaluation which determined that he had Delirium. It took a week ½ to get better from the Delirium. When leaving the hospital for his 3rd surgery the Dr put him on a less then 10 grams of fat daily diet. They did this so his heart wouldn't work as hard and there will be less complications. Stefan also has raynaud's syndrome and can't breath well when windy or cold. He has low immunity and poor muscle tone threw out his body. He receives Physical therapy to slowly build up endurance and muscle tone in his lower body. He also has Occupational therapy to help muscles in  his upper body and help with writing & speech for poor articulation. Stefan has limitations, he tires out easily to poor endurance due to his heart condition and is not able to participate in PE or sports with high contact. Severe complications will arise. Stefan  has adaptive PE. Stefan needs to take breaks when doing Physical activity and stay very hydrated , he cannot be in direct sunlight due  to a few medications he is taking. Stefans medications include Furosemide (diuretic)  Warfarin (Blood thinner) Ranitidine (Antacid). He will be on these medications permanently. I montior his oxygen and heart rate daily. Thank you for taking the time to read about my son, and all the prayers , donations , and shares. It means a great deal to us in this difficult time. To learn more about Hypoplastic left Heart syndrome. https://www.cdc.gov/ncbddd/heartdefects/hlhs.html