Monday, May 30, 2011

iSam




A post from Kristin!

Jason and I received a text from our great friend Jeff today that read, "Can we get a picture and update on Sam. Please." Note that the grammar makes this more of a command than a question, so we shall happily and apologetically comply. :)

The little guy has endured a tough post-surgery week! The good news: He appears to be stable, and if the missing vegetation is still lurking inside his little body, it's hiding itself quite well. One of the nurse practitioners who works closely with Dr. Jaggers, our surgeon, joked to him, "Guess what? I found Sam's vegetation right here in my pocket!" Also, Dr. Jaggers, a serious man of few words, apparently made up the word "vegectomy" to describe what he did to Sam's heart (according to the nurses, he even giggled a little at his own joke).

The not-so-great news: Sam is not a happy camper here at Camp Cardiac. He is, in fact, wearing his grumpy pants, and understandably so. Apparently, the Glenn surgery reroutes his circulatory system in a way that leaves him with a painful high pressure headache for a couple of weeks. Just as he did after his Norwood, Sam cries out in pain every time he sneezes or coughs because it irritates his healing sternum and his fresh chest incision. Also, he's constipated. It probably doesn't help that Sam is officially off the pain killers. Lastly, because Sam is far younger than most Glenn patients, he needs oxygen to keep his sats stable, and he spends most of his time trying to use his socked and swaddled little hands to pry the nasal canula off his face. It's on high flow right now, which apparently is the equivalent of sticking your head outside the car window at 70 miles per hour. No fun for our little Sam right now.

While we don't expect to see many smiles from Sam in the near distant future, we have found one thing that offers him consolation: My iPod. He loves it. Here's how we soothe him when he's at his crankiest: I play a song while I hold the brightly lit screen in front of him. While I sing along, I pat his tush to the beat of the song. He gazes into the screen until his puffy eyelids start to droop, and his mouth falls open a little as breathes himself into a deep sleep. His favorite song? It's "I Want It That Way," by the Backstreet Boys. I'm not sure if its the soft tune, the intellectually complex lyrics, or the screen image of the Backstreet Boys in their white leisure suits, but it's his favorite by a landslide (click here to enjoy the song and video--go ahead, treat yourself).

Here's one more picture of Sam enjoying his new hobby. And hopefully, we'll have some new smiling pictures to show you soon.

24 comments:

  1. Whatever works! Praying for little Wolfie, he's so adorable. Think he's earned his right to be cranky. Hope the pressure in his head lets up soon. God Bless you all.

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  2. Oh sweet little Sam! I admit, I laughed out loud at his love of BSB!:) So happy he is doing so well. We will continue to pray for your little guy! Hopefully the headaches will subside soon!

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  3. Poor sweet little guy - will now pray more specifically for the headaches to ease and the wound to heal quickly. Gotta love his tenacity and his your mother's instict to find the BSB as a way to help soothe. God Bless You.
    NKL

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  4. Praying for a quick and healing recovery so he starts smiling sooner than later. My heart breaks for you all and what you have to endure, I pray this passes quickly. I don't know if you can download movies on your iPOD but I suggest Finding Nemo, always a baby's favorite cuz of the music and bright colors=]

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  5. I think Sam likes that BSB song because of the steady and most of all "hard beat." Children are partial to those types of songs -- even Kindergartners.
    Much relieved to hear your optimistic news. I think of you constantly.
    Aunt Sharon

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  6. While I'm sure the beat of the song appeals to Sam, I suspect he might also enjoy some of the lyrics. After all, the song mentions heartache, which Sam is experiencing quite literally. Also, the title of the song suits Sam's spirit: he wants it that way...his way. And he's fighting for it. Go Sammy.

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  7. Beautiful pics you guys. Are you taking song suggestions? Unsolicited, of course...(these are personal not professional recs : ) ) - The Picture (by Kid Rock and Sheryl Crow) love it!, Indigo Girls (some old faves), The Boss, a little country music (Dixie Chicks perhaps). I could go on. Love that he is mesmerized and calmed by the visual and auditory input. Maybe he'll be a Vegas man. xoxo jules
    ps awesome hearing your voice the other day, Kris

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  8. i knew there was a reason for my apple product obsession!

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  9. Love it. He can be a part of the faculty dance next year. :)

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  10. I look forward to the return of a smiling Samuel. Maybe you should try some New Kids on the Block for variety?
    Anna

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  11. Bless his sweet heart! So sorry he isn't feeling well but so thankful he is on the road to recovery!
    -Kendall

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  12. Sam smiled a briefly today! Slowly but surely he's getting back to himself. I'm so grateful to be able to be here for part of the journey. All the docs, nurses, therapists, RT, and ISS people have been wonderful. He's in good hands! (Not that anyone was worried.) Anna, I like the NKOTB suggestion. Jason and Kristin are definitely interested in more suggestions if anyone has more.

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  13. Tammi T. (mom of an HLHS boy)May 31, 2011 at 8:39 PM

    I found music worked really well to sooth our Daniel but I didn't have an iTouch then, so he had to settle for good, old-fashioned CD's and archaic cassette tapes. {;-)

    I feel for the little guy since he is already off the pain meds. On one hand, you don't want to deal with the withdraw but then you don't want them to suffer more than they need to. I remember Daniel being so hard to wean from versed (sp?). The doctors joked about it.

    I will pray that his body adjusts to the new blood flow quickly and that he will be wearing his happy face again very soon. In the meantime, I'll quote a line from one of my favorite movies of all time, ..."Play it again, Sam".

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  14. Thanks for the update!! We were all encouraging Jeff to send that text :) We miss you all, but very happy to see that Sam has a great taste in music! Hopefully we will see you all very soon! Love you!

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  15. Oh, poor little boy! It's not easy when they change all kinds of things in your body!
    Glad the music is helping ... he has a great taste ;)
    Praying all will continue to go well!

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  16. How sweet! Love the picture! I am so happy to read that the surgery went well. Praying for you guys!!

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  17. Totally second (or third?) the NKOTB suggestion. My other suggestion would be "Parents Just Don't Understand" by DJ Jazzy Jeff. :) Go Sam, go!!! Here's hoping the transition to less pain is a quick and a smooth one.

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  18. In the middle of moving, so nothing clever or funny to say. Hang in there, take it one day at a time, and know that you are loved.

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  19. I like that you are starting him with the technology early. Keep it up. :) Hope all is well.

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  20. I am hoping that no news is good news. Missing the updates on your precious little boy.

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  21. I also am praying that no news is good news, and that perhaps Sam is on the up and up and absorbing all of your love, sleep, and time.

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  22. Praying everything is OK.

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  23. I was wondering how "our" little Sam is doing, too.
    I hope all is so well you don't have anything to tell :)

    Still praying for you all !

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