Friday, April 29, 2011

The Boxer

Upkeep:
1) Photo: a couple of people have commented on Sam's photo from the last entry, and I realized I forgot to give proper credit. A photographer named Angie Taylor, a friend of my sister-in-law, photographed Sam a few weeks ago. She took a number of beautiful photos and kindly sent several to us via email. Her work is what you are admiring.

2) Blog comments: in my day-to-day world (it's Jason), I'm not known to be the most emotionally demonstrative person in the world. In fact, a friend of mine recently said, "Dude, you don't even like to answer the phone; how can you make your blog so public?" Good point. Maybe I (we!) need the support in ways I hadn't expected. That said, Kristin and I love reading the thoughtful comments that so many of you leave. On days like today, they make a difference when we need to marshal our strength.

Update:
Last night, to calm Sam down from his middle-of-the-night desat, echo, and x-ray, I sang him a song. The only one I could think of was Simon and Garfunkel's "The Boxer." In light of the last 24 hours, the last stanza seems as prescient as ever:
In the clearing stands a boxer
and a fighter by his trade
and he carries the reminders
of ev'ry glove that laid him down
or cut him till he cried out
in his anger and his shame,
"I am leaving, I am leaving"
but the fighter still remains.

It's the last line that does it to me. In spite of all the trauma, so bad that you not only want to submit, you actually say you are done...and yet, you don't concede. That's the part that I love. You still remain. Wolfie will be fighting a new battle for the next several weeks.

This morning, we woke up to the surgeon in our room (never a good sign). We learned that there would be no MRI or CAT scan today because of risks to Sam's health. Overnight, his blood cultures grew. This means that the something in his heart is at least partially made up of infectious bacteria from the strep family. He started a new antibiotics regimen today and will do so for approximately 6 weeks. Two hurdles exist:
1) He needs semi-permanent IV access. This was accomplished today when cardiac anesthesiology placed a PICC line. We will spend at least tonight in the CICU to make sure the procedure has no complications.
2) The second hurdle is more dangerous. The goal is for the antibiotics to slowly dissolve/melt/erode the mass. Pick a word that works for you. The problem is that there is no way to control how this process occurs. Picture an ice cube on a sidewalk. If the ice cube slowly melts, you almost don't know it. Water pools and evaporates away from a central core, absorbing into the air with not much leftover at the original site. That would be ideal. Of course, sometimes the cube melts in some kind of fault line and a chunk will fall off from the original to be absorbed separately. If this happens, the chunk will go...somewhere. If such a chunk goes out his new aortic arch, it could find its way into his brain and cause serious problems. If such a chunk goes into his shunt, it could clog the whole works and cut off blood supply to his lungs...

The short version is this: the only viable way to treat this problem is with antibiotics. Which may work. But they may not. Or they may work in a way that causes more harm. Surgery could correct it, but due to risk level they will not schedule any before the natural progression of the planned Glenn surgery. If he can hang on until then, a surgical repair may be possible. We're just hoping that (for once!) he follows the rules, and his body allows the antibiotics to work as they are supposed to, to dissolve the glue holding the mass together and letting the rest melt into thin air.

Sigh...more long nights and no sign of going home again. We've been told anywhere from 3 days to 6 weeks. Will post again when we know something new. In the meantime, I can hear our little boxer grumbling post-diaper-change. Good night all. And CT, sorry I missed you. I was really looking forward to seeing you; it would have been nice to come back today. Soon maybe...

23 comments:

  1. What a roller coaster you have been on - continue to hold on tight, you know you won't concede. Praying little Samuel can do his part and the antibiotics will do theirs, and it will be days and not weeks before you are home again. NKL

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  2. Dear Kristin and Jason,

    I am devastated by the latest set-backs to Sam's recovery. But the two of you are strong and you "will do the very thing you think you can not do" (Eleanor Roosevelt). In the meantime, we are all in the wings waiting to comfort you, encourage you, and support you in whatever ways you need! Continue to "fight the good fight" (1 Timothy 6:12), all three of you!

    Love, Marlys

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  3. As the mother of a chronically ill child, I can relate to your emotional "guardedness". If you allowed everyone emotion you are feeling to flow freely, you couldn't be all you need to be for your family. I have learned to take every "punch" as they come. I am earnestly praying for slow melting and strength for you all to get through today, then tomorrow...

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  4. As the grandma of s six year old HLHS boy, I
    discovered what a comfort music brought to our
    little guy right from the beginning. Keep up that
    singing Jason!!! Musical crib toys are very soothing as well as CD's and DVD's. Our entire
    family sends you our best wishes for baby Sam's
    quick recovery! We have nothing but great respect
    for the wonderful doctors at Children's! They
    continue to give our little guy exceptional care. RLC

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  5. Kristin and Jason,

    I am so sorry to read about this setback. I will be praying the abx work quickly and effectively. Sending all the healing thoughts, love, prayers, and strength I can muster your way, for all three of you. Thank you for this blog - i check it daily for updates and pictures of your adorable son. -devon

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  6. So what kind of sax is that on The Boxer?

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  7. This must be terribly frustrating and frightening.
    I am praying today as always. I can't wait to look back and see that sweet baby is home for good!
    Can anyone who knows them tell me a way I can help? Is there a place taking donations for them?

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  8. Kristin and Jason - I'm an old friend of Anna's from law school. I check your blog every day and am sending prayers and positive thoughts from Atlanta. As a mom, I can't imagine what you are going through. It sounds like you are both incredibly strong - and so is your son! I continue to keep you three (and Sam's doctors!) very high on the prayer list.

    - Sally Belenky

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  9. Seems a blessed sign to see so many "anonymous" comments today. How glorious to know people all over the country are praying for your precious life, dear Sam. KK, don those running shoes and log a few more miles around Children's. Jason, box on, dear sir. I certainly pray Sam will!

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  10. Praying for you in Florida!

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  11. we had our 15 year reunion dinner tonight, and everyone is thinking of you guys and sending you good wishes! you are loved and missed! xoxoxo

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  12. My goodness...singing...the closest thing to the heavens I believe. Jason and Kristin, your little Sam feels your strength and love. Know we are praying are guts out...bell to bell!! =)

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  13. This is as close as I get to praying, Jason and Kristin. Sleep and eat.

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  14. Oh no....I must admit I only read the last blog up until you said you went home. With three small kids running around and a traveling husband, I dont get much time on the computer. I try to check on the few kidos I am following once a day. So, I am sorry my last post was only reflective of what I read. I am so sorry you are back and things are getting complicated, again. I will be keeping you all in my prayers. I know this part seems never ending!! We were in 10 weeks and I honestly thought it was never going to end. At times I was afraid it was going to end horribly. But here we are, after the long road we traveled (and still are traveling) with mr. Bowen growing, laughing, trying to talk, acting totally age appropriate. I remember thinking will life ever be normal raising a child with HLHS. I have to admit, things are starting to feel pretty normal. Hang in there! This too shall pass.

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  15. Hi, I am a parent of one of Kristin's 10th grade AHS students. My son and I have been following your blog and just want to let you know that we are thinking and praying for you and your family! Kristin has made such a great impact on her students and we can tell what great parents you both are. Stay strong for each other and that wonderful baby boy!

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  16. Hi Jason, Kristin and Sam. I am sending you all the positive energy I can. I pray the antibiotics do their job and melt away this infection. As always, you are in my thoughts and prayers. Micki

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  17. Hi Jason and Kristin,
    I check your blog every day, even when I don't post a comment. Thank you so much for keeping us updated. I was so sad to see you had to go back to the hospital. Jeff asks about you often, and after hearing you had to go back, he told me that it was harder on him to bring Kai back into the hospital after taking him home than it was to have him in the NICU to begin with--the up most in frustration.
    I can't stop marveling at the fact that you decorated Sam's room with a Noah's Ark motif, and then you were in the hospital for forty days. I just can't believe that it is a mere coincidence. I think there is something more to that.

    Samuel,
    Hang tough! You have already proven that you have a lot of moxy. Stay true to your grit and pull through this one too!

    Brenda, Jeff and Kai Rusnak

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  18. You are always in my prayers. I am humbled by Wolfie and his fight. It will be a fight that he will win. Hold on

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  19. Kristin, Jason and baby Sam:
    We are thinking of you, praying for you and sending love and hugs your way.
    Love,
    Becky and Molly

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  20. praying for you in Phoenix, stay strong and fight Wolfie!

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  21. Prayers to all three of you. Not a Day goes by in American Lit. that we aren't thinking about you. We are all hoping for a speedy recovery.

    Also I'm late in posting this but if you need anything I happen to only live 10 min away. Just shoot me an email or something.

    Again our prayers are with you.
    -Cory

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  22. Music is SO powerful - as is unconditional commitment. They put us in touch with the divine spark in and around all of us, the same spark that keeps us standing there when we would quit and somehow renews our strength and love in the midst of our stand.
    We're also singing songs for you and Sam - in hopes of supporting & expanding the love and strength around you.
    Darin, Jenny, Colin, & Mary

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  23. Tammi T. (mom of an HLHS boy)May 3, 2011 at 8:51 PM

    Jason and Kristen,
    I know that it isn't the best news but I was relieved to know that doctors were able to diagnose the problem. That seems like "half the battle".

    I know this is pretty scary but we know Sam is a fighter and you have a lot of support from family, students, friends, and others. We continue to pray for Sam, you and his caregivers. I have asked others to pray, too.

    Hoping to hear good news soon.

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