Hi Everyone! Thanks for listening to my story! I'm hoping to give you an idea of how I ended up here, and what you can do to help. For specific ways to help right now, click on the "journal" icon above.
I was born on June 4th, 2018. At first, the doctors told me I was breathing too fast. I didn't argue because I don't have much experience with that. They said it was either connected to clearing fluid out of my lungs (because of the C-section) or because one of my heart valves (Patent Ductus Arteriosis) hadn't closed yet. I told them this was normal and they agreed. They sent me home and I got to hang out with Mom, Dad, Oliver, and Avery. Avery is the one that kisses me like 100 times a minute, which I find adorable.
Life was awesome. My entire family thought every little thing I did was the most amazing thing they'd ever seen. I'd yawn and they'd go "Wow! He just yawned! Isn't God amazing!" I'd poop and they'd say, "There you go little buddy--nice work!". Grandparents, Aunts, Uncles--Everyone would hold me and tell me I was beautiful, precious, and perfect. I've already seen some amazing places like Iowa and Nebraska. Nebraska in particular was super fun to visit. Honestly, I had only been in the family a couple weeks but I was looking forward to being a part of what seems like an amazing group of people.
On Thursday, July 5th, mom and dad noticed that my breathing seemed rapid again. To be honest, I was feeling it too. After spending the 4th of July with family, I returned a little irritable but rested through the night. The next morning, July 5th is when my breathing picked up to 120 breathes per minute. My dad called the Nurse line and she encouraged him to call the paramedics. The ambulance came and took me to the ER. Mom joined me in the rig with the EMTs and dad/big brothers followed behind. That nurse saved my life because I went into shock on the way to the Hospital. If I didn't get there when I did, I may not have lived through this.
It was a quick visit with the ER docs and up we went to the CardioVascular ICU (CVICU). With the quick and helpful movements of the doctor, nurses, respiratory specialist, and others, I was able to start to stabilize. The CVICU doctor said I was pretty sick and we caught the issue just in time to prevent damage to other parts of my body. What the doctor told us is that my heart was pretty angry.
I said, "Yea it's angry. I have Dilated Cardiomyopathy. It's likely genetic". They didn't believe me, but then they did some Echo's, EKG's, MRI's, CT scans, Chest X-Rays, blood draws and a few other things and they started to come around. My Doctor, Doctor Edens is apparently one of the best in the country. His numbers (mortality etc.) are way higher than the national average for kids like me. Everyone tells me I'm lucky to have him.
Since I've arrived I've had: --multiple IV's (arms and neck) --a breathing tube helping my lungs --a feeding tube that goes through my nose to my gut --lots of wires measuring Blood Pressure, Oxygen, heart rate etc. -- Other stuff that I have no clue what it's doing
Honestly, this sucks. I find out next week if I need a heart transplant. I want to go home and play with my brothers again. I miss them, and I miss being held by my mom and dad. Thanks for taking the time to read about me, I'll keep you posted as things move forward.