As I write this I am sitting on the sleeping sofa in Nolan's room in the PICU (Pediatric Intensive Care Unit). The tv is on HGTV, something mindless and gentle. The room is dim and quiet for right now. And it is just Nolan and I. His nurse has a watchful eye looking directly in the window to the room. She checks the computer monitor every so often to watch Nolan's stats. I haven't asked but I think that Nolan is the only patient under her care tonight because she is in the door within 2 seconds of one of his monitor's warning bells going off.
It's 2am and I should be sleeping, but I can't. Nolan is on a ventilator that breathes for him when he "forgets" to. One of the challenges he still has from his premature birth and his NICU days - When his body gets under great stress he forgets to breathe, apnea. Nolan had surgery today to correct a growth problem in his skull, sagittal synostosis. Basically, a small portion of his skull was unable to grow correctly to accommodate the growth of his brain and it had to be corrected. The surgery went well. He was in for just under 3 hours. The anesthesiologist had to heavily sedate him because he started coming to during the surgery. Because he was anemic Nolan also needed a small transfusion of blood to keep him stable.
And so we sit now. Nolan resting decently, sometimes. And I pray as I type this that he will remember to breathe consistently enough while sleeping so they can extubate him - remove his breathing tube. Because as it is now, when he becomes aware of the tube down his throat, he gags and bares down, trying to force it out. He cannot make a sound so he cries silently. His heart rate shoots up past 200 beats per minute, his blood pressure rises, he thrashes around in his crib, even though his arms are gently tied down so he does not harm his IV's - But worst of all - he opens his eyes and looks at me in terror. He does not understand what is happening. I barely understand..... I place my hands on him so he can feel me, call upon Eli and his angels, keep eye contact so he can focus on me and talk to him to calm him. He quiets within a few minutes - during those minutes I am in hell. Having one of my babies die is hell. Watching one of my babies go through hell is...... is..... somewhere no one ever wants to be.
I am disgustingly tired, emotions stretched tightly, in a normal world I would be hungry or be sleeping but the only thing I can focus on is willing Nolan to breathe on his own so we can take out his tube and I can hold him close to me.