Waiting

The good news: J’s tube is working now.

The bad: it still needs to be changed out.

We weren’t able to get on the schedule for today, so the initial plan was to come into the hospital for IV fluids and wait for a spot tomorrow.

This was disappointing. J was tired, hungry and thirsty this morning. She told me exactly this much and actually fell asleep for a while. Very unusual for J.

We decided to test the tube again, and it’s been working. The nutrition helped J perk up a bit, and it bought us more time. We are now planning to stay home another night and go in tomorrow morning for the tube change.

A G-J tube is not a permanent solution for feeding. Sometimes it lasts just a few days; sometimes it lasts months. In our case, it’s worked for 18 months. Miraculous.

They can be tricky to change out. It needs to be done by an interventional radiologist. Julianna will likely need some sedation, and this increases risk. Sometimes they are not able to get the tube back into the right place. I’ve always known that this was a possibility. In our case, there really are no other viable options for feeding: these are the stakes.

Julianna is doing pretty well, but I know she’s worried. We’ve promised her lots of big prizes for going through all of this, and her bag of friends is packed.

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As for Steve and me, we are waiting. So much of this is beyond our control: scheduling, transportation, whether or not a second tube will work as well, how much sedation J will need. When the stakes are this high, it can be terrifying.

None of us really have control, not of the things that really matter. Sometimes you learn this through a long, hard, painful process. Sometimes it comes in an instant, and things are never the same again. It’s not comfortable, knowing you don’t have control, but it’s the human condition. Things in this world are not what they are supposed to be.

Today, we just wait. God’s love for Julianna is undeniable, so we trust too.

We feel the strength of your prayers and good wishes. Thank you for each and every one.

UPDATE: Change of plan – we are going in tonight so that we can be officially on the schedule for tomorrow. Like I said, the schedule is out of our hands. Haven’t broken the news to J yet…

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It’s always a good day when J plays. After she got some nutrition, she hand painted a tree and a sky. J: It can turn into a river if it goes too low.

25 thoughts on “Waiting

  1. Thanking God in all of these circumstances, and continuing to ask that He attend to each and every detail as only He can. May His love, as well as the love that He has given all of us for your family, fill you to overflowing!

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  2. Hi Michelle,
    Just a quick prayer from another CMT family. Not being in control is NOT something I’m good at, so I can’t imagine how you and Steve are keeping it together. Hugs and continued prayers across the miles. Hoping for an easy tube replacement tomorrow.

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  3. Michelle, you are amazing….I mean really living an “amazing” life. You’ve been incredibly blessed with Julianna, a most fascinating, strong, funny, and smart child with an “over the top” imagination and pure heart. She has captured my heart and I’m sure many others….and as I’ve said a million times before we’re fortunate to be living in the electronic information ages. Otherwise I would have never got to meet this awesome little girl and her family! Please never stop writing Michelle…I would miss you 🙂
    Praying the trip to the hospital is a quick and successful one.

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  4. Thank you. The update was the most important part of this day or any day for that matter. With all the prayers, posi tive thoughts and best wishes from Team Princess Julianna world-wide, I’am confident all will go very well this week God Bless, Valentino

    Sent from my iPhone 6 Plus

    >

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  5. Praying for Julianna to have a positive trip to the hospital and a quick procedure. You all have been in my thoughts and prayers since I heard the news yesterday. Thank you for keeping all of us posted. Even though you are not in control you have lots of prayers and hugs coming your way!

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  6. Sweet Julianna ,
    You are in our prayers! God has you in His hands and will keep you safe. We can’t wait to go on the next adventure when you get back home!
    We love you!
    YLK eemo

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  7. Your family, and, thanks to your willingness to share her with us, Beautiful Julianna, are so loved. The people she touches through her precious eyes and smile is a testament to God’s grace. You are all in our prayers!

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  8. Thanks so much for posting an update Michelle. We’ve been thinking of Julianna all day today. You’re all in our thoughts and prayers. God is great. ❤️

    The Sternthals (WCMA family)

    p.s. Our son Elijah still hasn’t taken his bracelet off since the fundraiser. You’ve all captured his heart – and all of ours.

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  9. Lord, I pray for favor in scheduling for Julianna and her family. I pray that as Julianna’s parents commit their plans to You and trust that You would cause these plans to succeed. Help Julianna through the process and send ministering angels. Give Your angels charge over her Lord. Holy Spirit be the Comforter we know you are and envelop Julianna and her family in an overwhelming sense of peace and joy despite circumstances. Guide the interventional radiologist, any doctors involved, nurses, and hospital staff as well. I pray for skill beyond their years of experience. I ask You Lord to grant them wisdom as well Lord and words of knowledge regarding anything Julianna needs in order to have a successful tube change that lasts – long term Lord. Dear Jesus. We know You are Healer … It is because of this I will continue to pray for healing Lord for Julianna. And so, here I am praying Jesus bring healing to this sweet previous child of Yours. Be healed sweet girl. In Jesus Name. Amen!

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  10. May God’s grace give you and your family (and especially J!) peace of mind before, during, and after the procedure. I pray that His love, and the love all of you have for one another, will see you through. And once the anxiety is lifted, that joy and happiness fills your lives to overflowing again. Also, BIG prizes! How awesome is that? 😉

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  11. Many prayers headed your way! I am a huge fan of your amazing little girl and I pray everything goes smoothly for her !!!! ❤ lots of love !

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  12. Julianna you are in our hearts and prayers, and we pray to God that you will be okay. I can’t wait to come back here and see that you are doing well after the hospital visit. From Pedro, Sujin, and Jessica.

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  13. Catching up with all that’s happening here with you. Sorry that the tough stuff comes up and even when it is expected it’s still kinda of “unexpected” especially with how quickly thinks change with kids. I’m checking out all the posts I’ve missed since being internet challenged lately… Tell Julianna, as always, her mer friends love her (and her whole family of course) and you’re all always in my prayers!
    Hugs from far across the waves (and country) always!

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