Taking the Long View

1We’ve affixed the photo above to Avery’s crib. The PITA Girl won’t be coming home any time soon.

This morning one of the PICU doctors laid out what was happening inside of Avery’s body. First, the flu which started this whole mess is slowing but somehow managing to keep Avery’s temperature up. The bacteria in her throat has been identified as a staph infection which has made its way into Avery’s bloodstream. This has led to pneumonia. She’s being bombarded with medication and the ventilator is still breathing for her  (though thankfully slightly less so as of earlier tonight). Her entire body is swollen to ridiculous proportions. Her lips and the tip of her tongue are cracking due to exposure. She just doesn’t look like my Gravy and it hurts so much.

At the end of the doctor’s explanation, he asked if we had any questions. Lynnette shook her head. “So, it’s basically randomness and bad timing?” I said. He frowned and nodded. “Yeah,” he said. “Too many things happening at once,” he finished. I could accept that. At least 80% of my entire belief system is predicated on the importance of randomness and timing alone. What I realized over the last 24 hours is that Avery’s living out one of those medical stories you catch glimpses of on the news. The patient goes in with a cough or skin infection, then ends up bedridden three days later in serious condition. This is how it happens: randomness and bad timing. It’s a perfect storm.

This evening another doctor spoke to Lynnette and me and repeated much of the same information from this morning’s assessment. He focus, though, was different. She told Lynnette and me that we have to take the long view. Now that the doctors are confident they’ve figured out what the problems are, they’re pretty sure that the process of Avery’s return to health is going to be a slow one, a lengthy one. “She’s fighting all of these things at once,” she said. “Unfortunately, the battlefield is her body. She will likely get better, but it will take some time.” They can’t tell us when all of this will be over, but it’s clear that we’ve got to accept that Avery’s health will return in baby steps. “The likelihood is that this is the worst she’ll get,” she continued, citing her experience with similar cases. “But I can’t tell you how long it’ll last.”

This is the worst thing that has ever happened to me. It carries the intense panic which accompanied the complications on the day of Madison’s birth, but it’s already 5 days worse. Last night a teary-eyed Madison apologized for getting Avery sick. Lynnette and I told her it wasn’t her fault, but I don’t think she believes us. I cry just about every time I walk into Avery’s room. In the quiet time that is spent in the waiting area or in traffic or in bed at night, my mind goes to work. It’s still too soon to call. There are too many variables. I imagine the worst-case scenario and every slightly-less-so iteration. This fills me with anger and frustration and dread and sadness and anxiety; I don’t sleep until my mind has exhausted all of the day’s possibilities. Then I think of new ones the next day. This is how my mind works. I don’t – I have never had the strength to turn it off. I am aware all this might last a while, only not exactly how long, and I am keenly aware that I am weak and ill-suited to drawn-out dramatic sagas. Paranoia and cynicism are my default mental settings. Humor and Pokemon Go are mostly ineffective as counter methods.

I know these are just words and that they aren’t even on paper, but words – even back when I was a kid – have always been my outlet. It’s the only productive way I know how to get things out of me. Thank you again for all the words and acts of support. The whole thing is amazing. So many of you have never actually met my PITA Girl, but your love for her – for us – is overwhelming. There’s an unconditional/no-questions-asked quality that has completely blown away Lynnette and me.


One comment on “Taking the Long View

  1. Pat Bilyk says:

    Dear Lynette and Phil, so sad to hear about Avery’s illness. You all are in my prayers and will continue until I hear that your precious little girl comes home to you healthy again.
    Many hugs to all of you!
    Pat Bilyk

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