I put Jack to bed last night at the hospital. He was exhausted after a busy day with Nana and then later with me. He enjoyed watching the men working on the patio outside of his window from the comfort of a nice new wheelchair-stroller that helps him to sit up and play.
When I put him to bed, he seemed a little cranky, a little sweaty, but he didn’t have a fever, and he fell asleep before I had even read him his story. I updated the blog and then went home and crashed myself.
Let me take you back now to May 6, 2013. I was 33 weeks pregnant with the boys. I woke up with a vague sense that something was wrong. I felt fine. I had a busy day planned at work. But all day, I felt like something was off. Attending to this feeling, I convinced myself that I wasn’t feeling “Baby B” – Sam – moving. I drove myself to the hospital and was told that I was in preterm labor. I couldn’t feel the contractions, but they were there. After a week in the hospital, labor had stopped, and all was well. I remember being told that it must have been mother’s intuition that brought me in, absent any other cues that something was up. I didn’t believe that. I hadn’t put my finger on exactly what was up, after all- Sam was fine, and had been moving all along.
I have wanted to deny the existence of mother’s intuition in the face of all that has happened. It is hard to believe in some magical, telepathic ability helping you to protect your children after one of them ends up in the hospital with a brain tumor. I wish that my eyes could have peered into Jack’s and read the gravity of the subtle signs I was seeing weeks or even months before we ended up at the hospital. I wish some small whisper would have told me to demand an MRI rather than to assume (as everyone did) that his choking was just residual congestion after a cold. I kept telling myself that if mother’s intuition existed, there wouldn’t be nearly as many kids in the hospital on any given night.
… But tonight, something crazy happened that I cannot explain. I woke up about 1:30a.m. after a dream. It wasn’t a dream with a scenario, players, or even a setting. I saw Jack, clear and vividly. Formula-colored secretions were pouring out of his mouth, nose, and trach. I woke up feeling hot. Every time I fitfully slipped back into sleep, I saw snatches of my hands twisting the suction tube, or saw Jack’s clothes soaked with formula and sticking to his skin. As I came further awake, I realized I hadn’t put the phone by my bed before I slept. I got up and walked downstairs. I’d left it in the car. I walked outside to go get it, thinking that I would just call the hospital to make myself feel better and get back to sleep. When I found the phone, sure enough, there was a missed call from Nemours.
Jack had vomited a very large volume in the night. He emptied his whole belly, and his nurse, Amber (one of my Nemours heroes for sure) reported that she suctioned out a large amount of formula from his trach. That, coupled with a heart rate and respiratory rate that were significantly elevated after the event has led doctors to believe that he did indeed aspirate formula into his lungs this time. He also spiked a fever in the night. (The fever has come too fast to be a result of aspiration, but it indicates that there is another problem which may have caused the vomiting.) His white count is elevated, indicating an infection. He was put on antibiotics again, and cultures were taken of his trach and his blood.
We will be standing vigilent over these next few days, watching for emerging signs of pneumonia from the aspiration event. Signs may include reduced ability to tolerate CPap trials, or a need for increased oxygen. We will be once again praying that the infection is not in his shunt, necessitating invasive surgery, but elsewhere.
I’m worried. We knew that we would see setbacks, but we had dodged the aspiration bullet so many times that the fact that it has finally happened leaves me feeling panicked. Yet, after the crazy, X-Files experience I’ve had tonight, I am beginning to believe that I am somehow standing vigil over Jack and Sam even when I am miles away. Miles away just isn’t good enough, however, and I’m writing this from my hospital cot, where I will be staying for the rest of the night. A parent’s gotta do what a parent’s gotta do.