Within an hour after the emergency csection I was told Braydon only had 17% of blood in his body and they didn’t know where it went. I was told he had unusual facial features and he wouldn’t even make it 24 hours. Within 24 hours he was put on a high frequency ventilator. One week later he was sent to Nationwide Children’s Hospital. We then learned Braydon has 22 Q Deletion a genetic disorder called DiGeorge. He also ended up having 3 holes in his heart VSD, ASD, PDA. Hypothyroidism, Grade 3 Brain Bleed, Chronic Lung Disease, Low Blood Sugars, Immune Disorder, ROP (immaturity of retina, that has had surgery), Severely Anemic, BPD (Bronchopulmonary Dysplasia). We kept wondering what the heck happened?? We were told he was healthy. January 4th, his original due date we were moved to a long term unit for his BPD. We soon later found out he has a huge cystic mass on his right lung. Then to find out he started to develop Pulmonary Hypertension and Pulmonary Vein Stenosis which is a death sentence.
We decided it was time to look for a second opinion because Nationwide decided they didn’t want to touch Braydon when it came to his heart. Cincinnati Childrens told us they would take us in and close his VSD, PDA and look at his veins. At the end of March Braydon received his open heart surgery and was a success.
A week later Braydon coded and needed over 2 hours of CPR. And resulted with him on ECMO( heart lung bypass ).
3 days later he was able to come off of it and finally get his cath.
His cath showed that his pulmonary veins are stenosising and it’s pretty aggressive. They ballooned and stented but was warned they may need to keep ballooning frequently.
April 20th we headed back to Nationwide and Braydon has received a trach and has went for another cath.
Currently a week ago Braydon got really sick turned into sepsis and went into septic shock.
Braydon is currently trying to fight all of this off. Still remains in the hospital, and will until off all sedation, on a home ventilator, and well enough to go home which is planned to be months.
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