Kingston
2020 EMBRACING BRAVE NTX Spring Recipient
Kingston was born 08.05.2019 Heterotaxy Asplenia, Hypoplastic Left Heart Syndrome, and with damaged pulmonary veins. Since then he has been also diagnosed having chronic edema requiring dialysis to help his kidneys and to keep fluid off, having extremely low lymphocytes confirming he has an immune disorder but an infectious disease doctor and an immunologist are still doing tests to figure out which one he has. He has all signs of SCIDS (bubble boy disease), but tests come back as negative. He required his first of 3 open heart surgery's at two days old, we almost lost him to his abdominal surgery to un-kink his intestines from his heterotaxy October 10th, and since then he has had two cath labs to balloon his two remaining pulmonary veins. December 21st, at almost 5 months old he finally got extubated off the ventilator and is doing great with his breathing so far. Soon, he will need another cath lab to put a stint in his pulmonary veins, we need him off dialysis so he can have a G-Button inserted because he cannot be fed normal yet, and then he will have his 2nd heart surgery before we can discuss getting him home to us. We are praying for a discharge around April as long as everything from now on goes as planned. And then he will have his 3rd and final heart surgery around 3 years old. This little man has been through so much but constantly fights, he is truly our heart warrior!
We want to think you soo much for all of this, because of Kingston we have made soo many new friends who we think of as family now. We are soo grateful for you all! -2020
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