At the end of the first quarter…
Lydia was well overdue for a good result from surgery, and she surpassed everyone’s expectations. Chalk it up to her being healthier than ever, attribute it to the creative and studious method the surgery team approached her case, link it to the general excellence at Harvard Medical…her nurse says she’s just a Boston girl, and she likes it here.
She tolerated surgery exceptionally well. The anesthesiologist said he hardly slept the night before due to sweating this case, but it was unfounded worry; she handled everything they threw at her like a rock star. Likewise, she’s tolerating the post-op conditions beautifully: vent settings have been lowered, her blood gasses and general vital stats have been exceptionally…normal.
Though we’re breathing a sigh of relief, we’re nowhere near the finish line yet. The lower section of her esophagus now has sutures around the top that are connected to taut lines that come out her back. Each day, they tighten these lines to encourage the growth and stretching until it’s long enough to attach to the top section, usually 10-14 days.
In the meantime, she’s on a heavy dose of paralytics and morphine. She’ll have moments of awake time, but will be unable to move, open her eyes, or even breathe on her own; she’s completely dependent upon the machines monitoring and providing all her needs. It’s so difficult to see. One morning, she was the smiling, giggling, rapidly advancing little girl who’s charmed the pants off two NICU’s in two cities, and hours later, she’s back where we’ve seen her so many times before: motionless and non-responsive. The overused cliché “heart wrenching” doesn’t seem to quite capture it.
In the coming days, we’ll discover if the esophagus is growing and stretching at an acceptable rate, or whether they’ll need to reopen the spit fistula on her neck and repeat this procedure on the upper portion of her esophagus. In a perfect world, we’re stretched and ready in 10 days or so, operation number two closes the gap, she recovers over the following weeks and she’s whole again. However, more likely scenarios include follow-up procedures to remove scar tissue from the new connection, a stomach “twisting” procedure to counteract severe reflux (which is apparently common).
I’m on the plane home to KC, more than ready to grab Amanda, Wyatt and Ava in a too-long bear hug. Lydia will rely on the excellent care of her nurses in Boston for the next week, and then a string of parents, grandparents, cousins, and great aunts are lined up to keep her bedside. We’re blessed, BLESSED by a family so giving, and forever grateful for the relief they provide.
We’re not out of the woods yet, but I would say we’re in a clearing. Rest well, Lydia. We will miss you; we can’t wait to see your smile again soon.
Friday morning, just before surgery.
NOTICE: this next photo may be challenging to see.
Saturday morning, post surgery. Sugar bear is still providing comfort.
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