Looking In On (Part 2)

I don’t mean to be shallow or superficial or anything (and go ahead and judge me for saying this), but sometimes looks are everything. Physical appearance matters, and sometimes for a lot, it turns out. In a roundabout way, let me explain.

David has a pretty incredible primary nurse. Her name is Sam. She was assigned to David in the ICN the early morning he was born and now that she’s his primary she’ll be with him every day that she works until he leaves. We love Sam. David loves Sam. Sam loves David. It’s a storybook plot. Sam cares about David enough that when he got sick last week, she called in on her day off to check on him. That makes us feel well cared for. She also listens to us and responds to our concerns, sometimes before we even express them. And this past week, while David had been sick and plateauing on his oscillator settings and looking as though he would never ever in a hundred years come off of it, Sam listened to us very closely.

Two days after David got sick he puffed out like a blowfish, to the point where he could barely open his eyes. It’s understandable that being sick, fighting an infection with antibiotics, receiving a sedative for the jiggling oscillator and taking fluids through an IV would turn him into a sponge. I started to call him the marshmellow man, because that’s what he looked like. I was calling him names, not to be cute, but because by the weekend I had a deep down concern about it, like even though I knew it was a normal reaction to everything his body was dealing with, I didn’t like it. I didn’t like the way he looked. And Sam knew this, from my nervous name-calling. So when I walked into the ICN on Monday morning with my fingers crossed that the downswing had curved back up and found out that David had once again increased his oxygen needs through the night and was still swollen like a tick, Sam had already developed a plan. It wasn’t to consider the undesired steroid option to give David’s lungs the boost they need. She wanted to give David a diuretic, and she requested to the doc to do just that.

So that’s what they did on Monday morning. They gave David a diuretic, and he literally peed his face off. I don’t say “literally” to be emphatic. Here is a photo of David on Sunday afternoon, which is what he still looked like on Monday morning, and what he had looked like for almost a week. Below that photo is a photo from Tuesday, after he was given the diuretic, and after he had literally peed his face off.

Sunday Afternoon

Tuesday Afternoon

Only hours after beginning his diuretic diet, all of David’s oscillator settings came down considerably, and by yesterday morning he was moved back to the conventional ventilator. Tomorrow there is talk of extubation. But we won’t get our hopes up.

He is feeling better from his infection. But in this case it also took looking past the med charts and numbers and machines and desats and settings and straight into the incubator—to David and his swollen little body—and to say, he just looks uncomfortable.

Plus, yesterday he turned one month old and he wanted to have a good day.

Based on a January 29 due date, we’re 1/3 of the way home. I put up his advent calendar today (thanks, Prue) to help us count up the days of December.

J & G & D

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3 thoughts on “Looking In On (Part 2)

  1. Jane & Graham,
    The story of Nurse Sam and her love, care and concern for David is so heartwarming. The difference in his body changes after the diaretic is
    remarkable.. Today was a good day and I’ll say an extra special prayer for continued healing and cleansing of the infection. He obviously is
    is a figher and will push through the next round of challenges. Love and hugs to you all. Diane/Peter

  2. J&G&D:

    Murray…the older….here. I am celebrating what rock-stars you three are. I read each post, eagerly, hungrily, for all morsels of David’s commitment to be with you…..to appear in Elementary School as dorky as you two, to be captured as dweebie as Annie, Wynnie, Peter & Murray did in Ray School foto-sessions against the white sheet. All six of us are in your court, but I have to say, Karen & I in spades. Wynnie was #2 or 3 in the then-new Hitchcock neo-nate unit in the old hospital – July ’74, driven by a bilirubin (sp?) problem at full-term requiring transfusions, not because she was a preemie. I/we were consumed with worry for her and for her 3lb neighbor, Stacey Hopkins, now Wynnie’s close friend and world-recognised silver artisan. I well-recall my 2AM visits bearing Karen’s breast milk, startled by beeping machinery, too-bright lights….and rocking chairs for my cuddle-moments with Wynnie. Frightening and exhilarating!….and the ‘Sams’, who were there for her!

    Jane – thanks for your integrity and wealth of affection in reporting-in – sooo thoughtful, clear, and from both of your hearts!
    Graham – I need to share a coffee or beer with you……say where/when, and I’m there for you!

    Love,

    Murray (& Karen)

  3. Dear Jane and Graham …
    What a difficult week you and David endured; you are so fortunate to have a nurse like Sam who is so attached to David … and so smart!
    I read your postings with a certain breathlessness … always wanting to know more. So I can’t imagine the patience you need every single day. Thank you, again, for taking the time to share your lives with us.

    love to all,
    Kathy and Finn

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