Thursday, April 14, 2011

Hungry Like the Wolfie

Hello all! It’s Jason. This morning I tried to educate our clinical assistant, Heather, regarding the value of 80’s lyrics, but she just wasn’t convinced. She persisted in claiming that those lyrics had no real insight or value. Sam was startled at her declaration (see picture below)! Hopefully, with a little help from the Wolfman, we can change her mind.

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.” 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... 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' 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.


  1. He is so precious! Love your lyrical approach to things. Praying for your little wolfie. ~Lis~

  2. Precious little man. Continuing to hold you all up in prayer. NKL

  3. I seriously have never been this glued to a blog. The experience and your incredible writing is like reading an intriguing novel and each post leaves me wanting more as I anxiously anticipate, hope and pray for the good news and great photos. Sam is absolutely adorable -- and I don’t usually like other people’s kids so much. I have an iPhone app that follows the blog and alerts me when there’s a new post, I check it probably six times per day. The three of you are amazing in ways that I can’t even begin to describe.

  4. I forgot to mention how I love the hats, too - especially the frog hat - very fond of the acronym F-R-O-G:
    Fully Rely On God.

  5. I'm glad to hear they now seem to know what the problem is.
    I love the photos ... Sam shows already such a character of his own.

    I agree with Mike Bradley ... I don't even know you guys personally but I check my computer several times a day to see if there's any news :)
    Praying as always for you all!

  6. "after bearman spooned him.".... LOL

  7. I checked in on you all via the blog last night. For some reason, I have been singing Duran Duran songs all morning.

  8. I don't know why some babies have to be sick. I despise it actually and whenever I meet God this is definitely one of the first bones I am picking with Him (Ok, probably not cause I will probably not want to rock the boat, but I would like to understand why some day). That being said, however, I think few babies are able to pull off being cute with all those tubes and what not, but Sam can pull it off quite nicely and still look really cute.
    I like him best tubeless however. I am sure the feeling is mutual for involved, including freaky strangers such as myself. Soon, I humbly pray.

  9. Tammi T.(mom of an HLHS boy)April 16, 2011 at 6:28 PM

    What fantastic writing! I love the use of 80's lyrics, too! (Am I showing my age?)

    I hope the NJ tube works for Sam's feeding issues. We continue to pray for him.

  10. Great news! I can't wait to see Sam rollin' outta that place without the tubes. Can you play "Rock You Like a Hurricane" for that?

    Uncle Pat

  11. Hi, Kristen & Jason!
    Sorry I couldn't stop by on Friday. As it turns out, I was wrong about the hospital--we were in University, and stayed with Nick pretty much the whole time. They took a big crater out of his face--it was hard to watch--but they got it all the first time, then stitched him up by noon. Teri was in tears, but we got Nick home & took care of him all weekend. His scar looks great & he even smiled & laughed some. Such a strong spirit. It was great to see you two & Sam last week. I hope your Easter with Rob went well, & you had a smooth weekend. Glad the G tube is working well--that will really help him I think. We're all thinking of you & hoping you go home this week!!

    Steve, Teri, Nick