Let’s start with a summary of the week’s issues: remember Weird Al Yankovic’s pastiche, “Eat It”? “How come you're always such a fussy young man?/Don't want no Captain Crunch, don't want no Raisin Bran/Well, don't you know that other kids are starving in Japan/So eat it, just eat it.” Yes, indeed, this is a poignant explanation of Sam’s eating issues this week. The kid just gets so fussy he can’t seem to keep down his lunch. When asked if he was, in fact, the saddest little guy in the room, Wolfie was quoted as saying, "Waah!"
Personally, the doctors and I blame Duran Duran. We know that Samuel has been “Hungry Like the Wolf[ie].” On the other hand, “The refl[u]x is an only child he's waiting in the park/The refl[u]x is in charge of finding treasure in the dark...Every little thing the refl[u]x does/Leaves you answered with a question mark.” Ok...so in retrospect, Heather may have a point: this particular song is nonsense, but you can totally dance to it. Nonetheless, the concept stands: reflux has seemed to be the main culprit. Yet no matter what variations we’ve tried to solve it, there have still been as many questions as answers. So, as you know from Kristin’s last post, we did a 24-hour impedance probe study starting yesterday afternoon to see if it could confirm our suspicions.
And sure enough, Samuel was hot right out of the gate. He channeled his inner Whitesnake: “Here I go again on my own/Goin’ down the only road I’ve ever known.” Yep. He kept up his modus operandi: feeding, reflux, aspiration, desaturation, bradycardia. In that order. Clearly “One Thing Leads to Another.” A nice little chain of cause and effect that we need to Fixx. The pattern continued all day. In fact, it got so bad around 5 a.m. this morning that Sam’s “sats” dropped all the way to 30%, and it took several minutes for him to recover. Very scary. It made us feel like Sting and the Police: “Every breath you take/Every move you make…I’ll be watching you.” So we and the nurses did. Which is quite trying. You see, “[H]e’s got eyes of the bluest skies/As if they thought of rain/I hate to look into those eyes/And see an ounce of pain.” So this morning during rounds we spoke to the doctors about what to do for this “sweet child o’ mine” while awaiting his test results...
Wow...talk about uncanny timing. The docs just showed up with the test results. They say that the statistics of the study suggest that Sam’s case of reflux is borderline. Borderline?! “Borderline, feels like I’m going to lose my mind! [They] just keep on pushing my love over the borderline.” However, when combined with the clinical correlation of his symptoms to the now-documented reflux episodes, they feel that there is a very strong probability that the reflux is the main culprit behind his complications. Therefore, today’s goals have now changed:
1) Keep Sam comfortable. That means no more tweaking his oxygen until his sats stabilize.
2) Stop the gavaged, bolus feeds that appear to be causing his severe reactions.
3) Confirm the reflux diagnosis. Now he’ll be fed exclusively through the NG tube, but it will be located trans-pylorically (you may remember he had this before while in the CI). It just means the NG bypasses his stomach and goes straight to his intestines. This has two benefits. First, it stops the reflux. Second, if he does well feeding this way and has no desat episodes while on it, it will strengthen the conclusions of the study, pushing the conclusions beyond “borderline” and further warranting the intervention of the G-tube.
Hopefully, tomorrow we will know with more certainty what our plan of action will be. Tomorrow is a new day. Hopefully, we can turn these recent complications around...which leaves me with three final lyrical references before I share some pictures. Sometimes, the “words you say never seem to live up the ones inside your head.” Okay, strictly speaking that’s from Soundgarden in 1994, but you get the point. In this case, Bonnie Tyler and Steve Perry really capture this moment better than I can. Tyler sings, “Turnaround, every now and then I know there’s no one in the universe as magical and wondrous as you/Turnaround, bright eyes.” That’s hoping that Sam can turn the corner. And Perry reminds me (after this rough couple of days), “Don’t stop believin’/Hold on to that feeling.”
So here we are holding on and believin'...in the meantime a few more pictures for your delight and for ours.
Here is Sam with my cousin Kevin and his wife, Jessica. They were in town this weekend from the East Coast; it was really nice to see them, and Kevin takes much nicer photos than we do.
Here Sam expresses consternation regarding the prospect of having yet another surgical procedure. He felt a little better after BearMan spooned him for a while.
And finally, here is Sam without tubes. Check it out; this is what he'll look like when he's out of the hospital and off the tubes. This is what we're holding on for! When interviewed about the possibility of going home, Sam said, "I've never been outside." Then he drooled on himself.