My son, Bryceon, was born on August 27,2006. I thought I was delivering a healthy baby boy. That was far from the truth. Not until a few hours later as I let a nurse whisk him away for vitals and made the uncoordinated walk to the bathroom to attempt to sit and possibly pee? Lol I heard a knock on the bathroom door and thought “oh my baby is back” I slowly walk out and see my little human in a travel incubator with oxygen and two EMTs taking him .My first thought was “that’s not my baby,my baby is fine,you got the wrong mom” The nurse then informed me that my son wasn’t breathing correctly and needed to be transferred to Children’s Hospital of Los Angeles (which gratefully was next door). I didn’t even know what to do or think. I unfortunately had to be in the hospital longer than most because I’m Hemolytic Anemic and I had an internal tear so my iron was extremely low. Two days later, his father informs me that our son has a rare complex heart defect. Mind you prior to this I was completely clueless to CHD as most of us are.
Bryceon was diagnosed with Dextro Cardia Situs Inversus with Heterotaxy,Unbalanced AV Canal ,Double Outlet Right Ventricle which is referred to as “DORV”, Aspleenia Syndrome and I feel like there’s more but at the moment even typing this out is dizzying. I didn’t get to see my son after his surgery until I was out of the hospital 4 days after. I had so many questions,fears,sadness. It was definitely hard to wonder what’s going on when as a mother you can’t physically be there.Especially a new mother.
Fast forward to our countless hospital stays for weeks ,sometimes months on end through the course of 3 years. My son fought through fluid build up numerous times that almost killed him, a strain of pneumonia in his lungs that the CDC had only see that strong in horses which almost killed him as well around 4 months. Countless chest tubes,open ups,closes,re-opens,staples,pokes,probes,etc. He’s survived the battle and came out like a champion.Now at 9, he’s as healthy as his heart allows except for a leaky valve.Is only on two medications as opposed to the many many he had to take for years. I now deal with the darker mental side that does come with extreme trauma at such a young age .We deal with PTSD and depression. Anxiety ,Memory issues, Some motor skill delays. My son also has Aspergers,Sensory processing disorder,ASD,ADHD which now is all lumped together as PDD-NOS .I know it’s a lot to read ,decipher,understand. It’s like reading in hieroglyphics at times for me.Bryceon handles himself as best as he can. I worry constantly about his future and his health and well being. He’s an amazing little soul. With his Aspie bluntness which is like a slap of truth in your face and I love it. He makes me laugh constantly.He and I have this deep emotional in tune vibe. I’ve always had it with him since he was in utero. I thank the stars for everyday I get to spend with him in my life.
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