To Fix a Broken Heart

Jeremiah was born in 2006 with a congenital heart defect (Truncus Arteriosus with ventricular septal defect). This is where the pulmonary artery is not in the right place.  In his condition his pulmonary artery was not connected to his heart and he had 2 large holes between the chambers. The blood was would not get to his lungs correctly without the ductus. He was ventilated immediately after birth. He needed his first open heart at just seven days old. This  surgery was to place a shunt in the ductus to keep it open (a vessel used before birth to reroute the blood around the pulmonary artery which usually closes at 3-4 weeks old) to give him blood flow to his lungs. After the surgery was successful  the doctors told us he might not make it past a year old. He was sent home on monitors and oxygen at 2 months old.
     The next open heart surgery was when he was 7 months old. This time he was going in for a complete repair, a conduit needed to be placed and the holes between the chambers of his heart needed to be patched. This took many hours and recovery was long and hard, but he is strong and made it through. The surgery was a success. His doctors and surgeons are amazing. At the follow up appointment, his cardiologist stated, "He is fixed, for now."
     He needed countless therapies to help him over come his delay from being so sick. He attended Physical therapy, Occupational therapy, Speech therapy, and Water therapy. Finally at 3 years old he was able to run and jump. He was able to tell me what he wanted or if he was hurt. We knew then that he was going to live a full long life. He is so strong and he wants to live.
      Over the years he has needed to have a few procedures. Each time he is ready for a procedure, the cardiologist takes it to "conference." This means that he takes it to a meeting at our local children's hospital (Phoenix Children's Hospital) where they discuss all of his options and which one would be best for him at this moment.  Jeremiah has faced this conference twice before. When he was 3 years old this conference led to a procedure where a tube with a tiny balloon is inserted into your blood vessels. The doctor inserts the catheter in through an incision near your groin and follows the blood vessels up to the heart where they inflate the balloon to widen the conduit. This procedure is called a Heart Catheterization.  The same outcome came from this conference when Jeremiah's conduit was closing at the age of 7. 
     It is now time where he must face this conference again.  Although he does not face it in person it is just a stressful. He is 11 years old this time and he understands what the options are. We are not sure what procedure will be recommended, whether it will be a heart catheterization or open heart surgery. He knows his conduit is failing and therefor his heart is working harder. He knows that without this procedure / surgery he will die. He understands when the doctor says to watch him for symptoms. It is the hardest thing a little man can go through. He is scared of death. He says he is scared to sleep because he might not wake up.  As his mom it is my job to comfort him and tell him he will be just fine, and I do. I sit on his bed for long periods of time and tell him that he is  strong and he will make it through this. I reassure him that his doctors and surgeons are amazing.  
     While he is worried about his life and not wanting to die. I cannot help as his provider to worry about every aspect. As my son does have insurance , my mind often wonders to, "How will I pay the copay / deductible  for this? What if I have to pay a portion upfront?" They say a mother would beg borrow or steal to help her child. Well I am here,  I am asking for help. The money raised in this will be used towards medical expenses before, during, and after surgery. The tests before the surgery. The surgery itself.  Any medical supplies needed after the surgery.   Please help to save my son and fix his broken heart.


Update: Jeremiah had surgery yesterday morning, July 3,2018. His procedure was a heart catheterization. The cath doctor said that they did what they could. They were able to go in through the groin and open the left pulmonary artery some, however the right pulmonary artery where his homograft is was to damaged to inflate and stent. At this point the case is going back to conference to determine how urgent it is and how soon the surgeon can operate. The doctors are hoping it will be sometime in the next couple months. The next surgery will be complete open heart to replace the homograft and fix his right pulmonary artery. I can’t imagine the anxiety he has from this. So please continue to share his story and help us reach our goal to cover the medical expenses.

Donations

  • Emily Livingston 
    • $20 
    • 23 mos
  • bones thaskata 
    • $10 
    • 23 mos
  • Elizabeth Lee  
    • $50 
    • 23 mos
  • Jon Nelson 
    • $50 
    • 23 mos
  • Adore eLiquid 
    • $500 
    • 23 mos
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Organizer

Julie Ann 
Organizer
Phoenix, AZ
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