Roller Coaster, Part II

The roller coaster continues.

Julianna has a tricky stomach. It’s the best way I know to describe it, because there’s really no medical terminology or explanation for the retching that has plagued us.

We took J home on Thursday. On Friday, she woke up and her stomach was not happy. She needed suction every minute and felt the urge to throw up almost constantly. It took three people to tend to her needs.

On Friday afternoon, it finally happened. She retched and aspirated – badly.

I have seen my daughter struggle to breathe many times, and it never gets any easier.

Through it all, Julianna was Julianna: brave, insightful, a great communicator.

J: Why did this day have to come? This isn’t enough to bring me to the hospital.

M: No – we’re not going back. No hospital.

J: And no NT.

M: I promise. No NT suction ever again. (NT=naso-tracheal suction – going through the nose to suction the throat and trachea)

J: nods. Can you put Cinderella’s carriage on my table? (J got lots of toy rewards for her hospital ordeal. She likes to make sure that her new toys feel welcome. She wasn’t about to let us to put them just anywhere.)

We got her through this mini-emergency, but the rest of Friday and most of Saturday was dicey. She slept restlessly. She needed a lot of oxygen, and her heart rate told me that she wasn’t comfortable. She went through periods of needing constant suction. She had a few more retching episodes, but luckily we were able to catch them in time so that there were no more aspirations.

And Julianna was still Julianna.

J: Mom, why did you cry yesterday? (Like I said, it’s not easy to watch your child struggle for breath.)

M: I just couldn’t help it, Julianna. I’m sorry.

J: Why did you look up?

M: I don’t know – it just ended up that way.

J: Were you looking to heaven and God?

Her bravery brings me to tears, but her spirit makes me laugh. After another dramatic retching episode, three of us stood around her bed, relieved to have dodged another aspiration.

J: Well, don’t just stand there looking at me!

On Saturday, J fell asleep before 7PM. I can’t remember the last time this happened, and I braced myself for a 2A wakeup.

It didn’t happen. J slept – solidly and quietly – until 8:30 the next morning. She woke up and the old Julianna back. Her eyes were rested and sparkling. The constant need for suction and feeling that she was going to throw up was gone.

I can’t explain it. It’s another miracle. We’ve had so many.

My mantra these days is “happy and comfortable.” Julianna has been through too much. Whatever happens, I want her to be happy and comfortable. Tonight, she is both.


The dreaded IV. It didn’t go in the first time, but J was a star. “My vein did not cooperate,” she told me the next day. 


New day, new haircut. Everything is better today.



22 thoughts on “Roller Coaster, Part II

  1. “Happy and Comfortable” sound absolutely wonderful and exactly what I’ve been wishing for Juliana. Happy to hear she is doing well!


  2. Oh my God, I am so sorry for all that you’ve been through and continue to go through. Your beautiful daughter just amazes me! Her spirit, sense of humor, strength, imagination — she is amazing! God bless you. Thank you for sharing your story. Big hug.


  3. I feel your pain as a parent. I’am relieved and happy the Princess is improving and feeling far more comfortable. Also happy to hear you’re a bit more sleep. Your daughter is loved & admired. She’s also my favorite person in the whole wide world. : ) Valentino Sunday May 15, 2016 6:40pm

    Sent from my iPhone 6 Plus



  4. Princess J your bravery makes me cry. You are such a good brave girl 👸🏻sending you and your family all a big hug😘😘😘


  5. Such an adorable haircut for an even more adorable child… heart is with all of you,all of the time ….prayers for some more wonderful moments that turn into more wonderful days and weeks….You are all troopers!


  6. Gee, J! With your new haircut. You look so much older! I had to stop thinking of you as a little princess and switch over to Princess! Sorry for all the exclamation points, but this transition in looks is so huge.


  7. I am so, so very sorry for all that Julianna endures – and for all of you, her family. I cannot imagine the pain that hits you, Michelle, or how you bear it. Princess J is an extraordinary little girl. And I feel blessed to know of her and her story. Thank you for sharing your lives. Princess J is an daily inspiration.

    Janice King


  8. Love the hair and the beautiful face.
    Praying that Princess J stays comfortable. Lots of love sent to all of you, what a wonderful family!
    God bless!


  9. Julianna we are so happy that your back home, and love the new hair cut. I hope you feel better soon. I also hope your family is doing well. Sending our prayers and love from Pedro, Sujin, and Jessica.


  10. Julianna looks radiant with her new haircut. A princess if I’ve ever seen one!

    You don’t have to answer, please pardon my curiosity, but is there a reason she can’t have Zofran when she’s nauseous? Or does it not work for her somehow?

    J is a treasure. Your transcriptions of her words have made me laugh aloud regularly since I first heard of her story six months ago, even as I’m in the midst of weeping for the cards she was dealt. Such a brilliant, fiery wit she has. And what a beautiful family she has too! You are angels, each one of you. You are all in my thoughts frequently. I’m sending you every ounce of love in my heart tonight. I hope you can feel it.


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