Saturday, May 21, 2011

The Short Version (can you imagine the long?!)

Hi all, it's Jason. I'll do my best to summarize the kaleidoscope of the last few days briefly.

Thursday and Friday have been as tough as any days we've had yet. So I try to remember what Atticus Finch tells his son, Jem, in To Kill a Mockingbird: "Courage is not a man with a gun in his hand. It's knowing you're licked before you begin but you begin anyway and you see it through no matter what." Thanks to the most recent news, this is where Sam and we are--trying to remain courageous.

So here's the scoop...though there is a lot of debate regarding Sam's current status--his hemodynamics, the seriousness of his stroke, the severity of the vegetation (now vegetations!) in his heart--one thing is certain: Sam doesn't care a lick about what doctors say; he just keeps on keeping on. He has courage (perhaps born from ignorance of the severity of his condition). The least Kristin and I can do is try to match it. And I believe before we are done, we will need every ounce of it.

Here's the scoop...Sam had a significant neurological event, yet the stroke and resulting seizures are not entirely unexpected. We knew bits could break off of his tricuspid valve vegetation and go to other parts of the body. Also, as a nurse corrected me the other night, having a stroke is not like being pregnant; there are several degrees of severity. Evidently, the severity is largely a function of the size of the embolus, in this case the clot that lodged in the brain causing the stroke. Sam's appears to be small. And while no stroke is good, Sam's prognosis in this regard is still relatively positive. Because it was a small stroke, because his brain is still developing, and because medications appear to be controlling the seizures at this point, there is a good chance his brain will continue to develop with little negative effect. No harm, no foul as it were. We may never even see pronounced, long-term effects. In fact, after three days of frequent seizures, Sam was in many ways back to his normal self today. Check out the pictures at the bottom!

On the more...challenging side, there is still a lot of mystery (and some disagreement!) regarding the source of the embolus. Echocardiogram now reveals another vegetation on the former aortic valve. There was also growth on the tip of the PICC line, which has since been removed. These new growths are most concerning. If they weren't there when we started antibiotic treatments, that means they are drug resistant or a different strain that has likely spread elsewhere, making him bacteremic. If that is the case, that would change the nature of his struggle significantly for the worse. It would mean that antibiotics may have little, if any effect, and surgical options would have a high risk of mortality. However, his first blood cultures have returned negative (which is good). If the next few are the same, then perhaps this other vegetation was present originally and simply was not appreciated. If so, that would be encouraging; it would mean the status quo continues and we observe Sam carefully, treat his stroke, and move on towards the second surgery, the Glenn, as before, hoping we can address these vegetations surgically when the Glenn is performed. And though there are a hundred other variables, and this summary does not begin to reveal the complexity of all this, this is the best I can offer in a brief note. We are gathering our courage and preparing for the results of the next several days' tests.

Here's hoping Wolfman ends up on the right side of the odds for once! In the meantime, here are some pictures of Sam this afternoon. He's up to his usual vivacity, and I, for one, love him all the more for his ability to keep smiling while all this nastiness is going. It is his most endearing trait, and I will do my best to learn from him how to remain courageous.

So...without further delay, here are some new Wolfie pictures. Let's call it "The Smile Series"...







Not a smile picture, but I couldn't resist. And don't worry...no Wolfie's were harmed during the taking of this photograph! The bear is not actually kicking him in the face; he's just holding the binky in place while Sam tries to go to sleep. Good night everyone, and here's hoping the morning (and especially the next few blood tests!) turn up good news.

19 comments:

  1. Love the pictures! The courage that Baby Sam has is unbelievable. Keep fighting the good fight LeClaire family.

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  2. He's a pretty stinkin cute baby! Praying for everyone, as always. Thanks for the update!
    -Kendall in Oklahoma.

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  3. He is so amazing. Giving you guys strength and love and courage. Love you guys, jules

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  4. Precious, precious little man - so innocent, and quietly courageous in spirit. There is a lesson to be learned there, for sure. Praying for you all, as are many others you will never meet or know - may you take strength and comfort in that.

    Be on your guard; stand firm in the faith; be men of courage; be strong. Do everything in love. 1 Cor.16: 13-14

    NKL

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  5. Day and night you're in our thoughts and prayers (which makes for unusually adorable thoughts and prayers). And for all the awful trials & tribulations you're facing, you still manage to inspire us with your loving courage under fire and your eloquent honesty in each blog entry. (I'm repeating myself, I know, but your example of true family and devotion can't be overstated.)

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  6. Oh, I just want to hug and cuddle him. What a precious, wonderful, courageous, adorable little man! ♥

    I'm praying the blood tests will come up good and I'm especially praying for courage and hope for you all!

    {{Hugs}}

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  7. Jason, your quotation from To Kill a Mockingbird reminded me of another quotation about courage: "You must do the very thing you think you can not do" (Eleanor Roosevelt). Each of you continues to fight against daunting obstacles that would crush most people, and you inspire all of us that know Sam's story. So "once more into the breach" dear, strong friends and courageous, precious Sam. We are holding you closely in our hearts and prayers!

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  8. The three of you are in my thoughts each day of your struggle. I admire your strenght, Sam is one tough little cookie.
    Thanks for posting the smiling pictures, they help on this end.
    Love, Uncle John

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  9. Tammi T. (mom of an HLHS boy)May 22, 2011 at 11:39 AM

    I'm writing this with tear-filled eyes ... how my heart aches for you and your little man. Only God knows the heart ache and agony you must be feeling.

    I love the "smile series" of pictures you shared. Wolfie is so precious and so courageous. I'll be praying for more smiles, for the blood cultures to return "negative", for good results for all other tests, for courage, hope, peace and strength for all.

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  10. Love, love, love the smilely photos! Sam looks like he is gaining weight too - much chubbier now which is great!
    Xoxo Aunt Anna

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  11. I don't think Sarah told you, but you all are on our prayer list in our church. We will continue to send good thoughts and prayers your way. May you find your courage from your beautiful little boy. God bless...the Gaipa family from CTHS

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  12. Thanks, as always, for the pictures and update. Sending good vibes, Andy M.

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  13. "Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” You guys are so amazing, even your posts with bad news give me such a sense of hope, love and the realization that today is a gift. It is crazy that a 2 month old little boy that I have never met is teaching me to live a more meaningful courageous life.

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  14. The pictures are amazing. I'm thinking of you and sending many many good thoughts. Love, allie

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  15. Love those pictures. That smile is amazing. So excited to see you guys. Love you, kare

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  16. Jason, one of my favorite quotations from To Kill a Mockingbird is when Atticus says to Scout: "You never really understand a person until you consider things from his point of view - until you climb into his skin and walk around in it." Thank you and Kristen for allowing us to "walk" with you during this most important and personal time of your lives. Thank you for the clarity and the dignity in which you help us understand what Hypoplastic Left Heart Syndrome is and what it means for Samuel. Thank you for posting pictures of your beautiful smiling son. Thank you for being you! Sue

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  17. Mr. Leclaire!
    Little Samuel is looking more and more like you every time you post these adorable pictures! I hope everything goes well with the surgery!
    Vaishu

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  18. I was in tears looking at his cute smiles. lesson learned from little Sam; in the midst of life storm always be courageous and put on a smile. it is well little Sam, God Loves you.
    Christin.

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    http://android-fore.blogspot.com/

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