Roller Coaster

Good news: The G-J went in just fine, and Julianna was a champ. No sedation needed. Our ambulance ride home was booked.

Bad: Twenty minutes before the scheduled departure, we became concerned about some of the fluids coming out of one of her tubes. The medical team was also concerned, and an X-ray was ordered.

Good: The X-ray showed that everything was in the right place. Second ambulance scheduled for later in the evening!

Bad: Twenty minutes before scheduled departure (again!) J started looking queasy. She retched and aspirated a little bit. Not going home today.

We hope that it was a tiny little aspiration. We hope that it happened because her system was a bit unsettled from recent events. We hope the tube works and that we can bring her home very soon.

We’re all disappointed. We’ve been through much worse, but it still stinks. I hate being confronted with her fragility.

So fragile. Our miracle.

IMG_2962

Taken when we thought we were going home — the first time. 

20 thoughts on “Roller Coaster

  1. mmm thanks for the update. not the best possible of outcomes but more im portantly not the worse possible of outcomes. hoping and praying you’ll return home with Princess J very, very soon! 😀 Valentino 05/06/2016 12:50am

    Sent from my iPhone 6 Plus

    >

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  2. Seems the first thing I think about when I get up is how young Julianna is doing and she’s kept in my prayers, as are you all. Thank you for the update. It’s very kind of you.

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  3. I would think so too, that it’s probably a side effect of all the medical stuff that she’s gone through for the past 2 days. But it’s just gut instinct (pun unintended), & by no means is this some kind of medical conjecture lol, more like nosey-poker guessing, based on anecdotal experiences of my social circles ..

    But YAY champ J for being sooo brave – not needing sedation & keeping really still is a very champ-like brave thing to do ❤ Hope the gut issues settle quickly & you can go home soon 🙂 Meanwhile J, keep living up to your Supergirl namesake as per printed on your tee – with love as your superpower, you can get through this & come out even wiser & more resilient.

    blessings & love from SG x

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  4. Love coming from Sacramento to Juliana! Close your eyes and imagine Falkor coming to pick me up with a basket full of love…..heading towards Washington you might be able to see us out the ambulance window racing to beat you home…wave hello to us Juliana! We will get to your house before you, and you’ll feel the love we scattered over your house as we did a flyby. (Falkor will not be a happy dragon when he sees I’ve put on a few pounds…might be a tough flight for him!)
    We hope your ride home is a comfortable one 🙂

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  5. Thanks Michelle (aka mmm), for the update. I pray you and Steve will be able to really rest soon. Julianna’s eyes always tell it all….so beautiful. I can see, she’s keeping up a brave face even though she probably is fully exhausted from all the procedures. We’re all so proud of her. I pray you all get to go home soon, but am grateful that everything will thoroughly be “checked out” before she is released; so there are no complication’s when you get home. Julianna, I love your Pretty Pink Supergirl Tee and your hand painted smiley face on your polished fingernails. I agree with Lynn’s post from Fountain Valley, CA. I too am looking forward to your ambulance ride home with the people who get “the honor” of driving our Princess back home. I’m Praying that the Snow Family can tangibly feel all our Love and Prayers.

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  6. PRAYERS PRAYERS AND MORE PRAYERS FOR THIS PRECIOUS BEAUTY TO COME HOME SOON! Please know that so many are thinking of you all!!

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  7. Thank you so much for keeping us informed, Princess J is such an inspiration. The wisdom and strength that she has at such a young age is amazing!
    Sending prayers and all my angels your way.

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  8. No sedation!!! Brave doesn’t come close! I freak when I start my own I.V.s and I use a cream to numb the site! Michelle, you all stay in my heart and my prayers! Julianna is one of my heroes! She is one of the best teachers I think I have ever had the pleasure of knowing! Rest comes in spurts and I pray that you all have enough spurts of quality rest and every good thing that brings more blessings than grief and stress! To say Julianna is something special is such an understatement! As usual and forgive me for sounding a bit disjointed here (since I understand to a degree what lack of sleep can do), my love and prayers are always with you all!!

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