The cardiologist did another echocardiogram and told us that Kai would eventually need open heart surgery to replace the malformed valve. He said it could be weeks, months or years, and that we'd have to wait for him to go into heart failure before surgery would be performed. We left feeling all sorts of emotions. Two days later, Kai began vomiting, had diarrhea, and became hypothermic. He was hospitalized for three days under the assumption that he had caught a stomach virus. Cultures of his blood, urine, and spinal fluid came back negative and they did not think his clincial signs were related to his heart. We went home and had a normal baby for another four days.
Kai then presented with the same symptoms, and we rushed back to the hospital. While there, he stopped breathing and had to be resuscitated. Once he was stabilized, the doctors' agreed that his GI signs were related to his heart and poor circulation of blood to his organs. He was transported to Duke University Children's Hospital where we've been in the pediatric cardiac ICU for more than 2 weeks. The day after he arrived (Christmas Eve), he arrested and we had to make the difficult decision to put him on ECMO life support. Two days after being placed on life support, he went into the OR for open heart surgery to replace his mitral valve. After attempting to fix the valve, the surgeon ended up replacing it with a mechanical valve. Since then, he's had four additional surgical procedures, including placing a permanent pacemaker.
Thankfully,Kai our little heart warrior is on the mend and came off life support after 7 days. Since then, he has come off the ventilator and is breathing on his own. He's learning how to feed again and is beginning his blood thinner regimine, which he will be on his whole life to prevent clotting in the artificial valve. As you might imagine, this has been a very trying time for Jenessa and me. Only 50% of pediatric heart patients make it off ECMO, and Kai has beaten the odds!
First off, we thank our friends and family for being so supportive during this difficult time. This process has brought us to some dark places, and your support and love has helped us through the toughest moments of our lives together. Your continued thoughts, prayers, texts, emails, visits, etc have kept us cheered up and energized to fight for Kai.
As you can imagine, these four hospital stays, multiple surgeries, and months in hospital will have a significant financial impact on our family. The medical expenses, travel, food, lodging, and a myriad of other expenses add up. If you can make a donation, we would be forever grateful. We appreciate your generosity during this difficult time.
We are unsure how much longer we'll be in the hospital. We appreciate your continued support as Kai works his way back to good health. Kai, the heart warrior, continues to amaze us with his strength, patience, resilence, and love!
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