When Dr. Reddy came in to talk to us last night, he felt pretty hopeful that Aiden would have his breathing tube removed either in the operating room or very shortly after. This is always the goal after a Glenn procedure because the breathing tube can interfere with the pressures of Aiden's new physiology. (Now, the blood flows passively to the lungs from the superior vena cava whereas before it was pumped to the lungs from the right ventricle through his sano shunt. Even though it seems counterintuitive, a breathing tube can actually make his oxygen saturarions lower because it obstructs blood from reaching the lungs...this video below really helped me to understand how this all works, if you are interested)
However, Aiden remains intubated. He has had tachycardia (fast heart rate) and lower oxygen levels than expected (currently sitting at 71% even after a dose of nitric oxide) that we need to figure out before we can extubate him.
Aiden has started to wake up three different times. The nurses have been great at quickly getting him sedated but it feels like forever as I wait by his bedside for the medicine to kick in, with my hand on his forehead trying to calm him. His heart rate increases even more, his blood pressures go up and the monitors start alarming. Seeing his face turn red and grimace in what I can only imagine to be excruciating pain and/or discomfort breaks my heart into about a million little pieces. And watching his mouth open as he tries to cry out, but hearing no sound, smashes those pieces into dust.
Even though I know that everything is under control, and quite normal after major surgery, my hearts drops and I hold my breath when something changes and Aiden's room fills with doctors and nurses. His oxygen levels dropped to 58-59% about an hour ago and people came rushing in. I sat quietly in the back while they figured things out and prayed that he would be okay. I knew he would be, but sometimes you can't stop your mind from thinking about the worst.
Aiden is so incredibly strong. I have told him this at least 100 times today. As I get ready to leave him and go downstairs for the night, I know he will be watched over by very capable doctors and nurses. And even while I can't be by his side 24/7, I find comfort in knowing that his Father in Heaven never leaves him. And He will get us through this.
My heart goes out to you, Brent and Aiden. Wish it could be easier and asking God in my prayers to watch over all of you. Your post is amazing. Thank you for keeping us updated. A long time ago one of Tom's nieces asked Uncle Dale if he ever got lonely living alone. She told me that without hesitation Uncle Dale replied, Oh I don't alone, God lives with me. I've always remembered that and know that he is with you now watching over all of you.
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