Aryn born on Jan 28, 2008 who was born with a congenital heart defect called Hypoplastic left heart syndrome. HLHS is where the left side of the heart is underdeveloped. He underwent his first of three surgeries at one week old, he had complications coming of bypass almost had to be put on ECMO (life support), but made it through. He spent his remaining three months on earth here with us on and off breathing machines. having rhythm problems going from bradycardia (slow heart rate) some days and tachycardia (fast heart rate) others. The days in between there were good days and bad days. My favorite days were when we could walk around the unit with him and see him look around so innocently at all the new stuff out side his room and when he was full of smiles. I loved that little boy with all I had I sometimes feel like it just wasn't enough to keep him here. His last week here with us was really touchy his second surgery keep being rescheduled finally it was scheduled for that Monday until he lost his broviac line (similar to an iv but goes in the chest and is a little more permanent) to a clot and he was no longer receiving his heart meds for is rhythm and it was rescheduled once again fro that following morning which was a Sunday but unfortunately the morning of his surgery moments before he was to be wheeled out to the OR he started having apnea spells and started turning grey in my arms as i am holding him so i call the nurse in she looks at him and immediately took him from me turned on all the lights, called in the docs and in a matter of 20 min it went from me holding my baby spending time with him before his surgery to complete CPR they did CPR for an hour and half. If your wondering why so long they were trying to get lines in him to be put on ECMO but he also had a clotting disorder so every time they tried he would clot off plus it made it even harder cause his blood pressure was so low which made it even harder once they finally got him hooked up to life support to give his heart a break. he was on life support for three days on the second day the doctors sat me and my fiancee down to tell us that it didn't look so good he hadn't moved or woken up yet and his kidneys had shut down the the next day they did an EEG and it showed very little brain activity mean while he was having seizures so we decided to let him go and be with god.
I remember that all happening so fast. When we got back with Lily, I saw you guys out and about with him. I was like, YAY he is doing good, they told us he was on his way to his second surgery. I was thrilled. Then everything turned south that month...it was litterally hell that month and I know you will agree with me. I couldn't believe it when I saw him, then I saw you. I close my eyes and I can still see it.
ReplyDeleteIt makes me so mad that CHD's dont have media awareness. You see the News channles covering everything else. It is easier to see a chemo patient, bald and hooked up to an iv laying in a hospital bed, then seeing a chest cracked open, bags of blood behind the bed and numerous machines keeping a child alive. I would love to get together sometime. You and I can work for the cause. I don't know how we will go about it.. BUT I AM WITH YOU...CHD AWARENESS if my LIFES work now. We will stand together and let our voices be heard, let Aryns story be told along with Lily's and hunderds others.
I am glad you started a blogspot. I already added you to our friends list!
This comment has been removed by the author.
ReplyDeleteThis comment has been removed by the author.
ReplyDelete