Some of you know we’ve been having difficulties with Callie’s g-tube for almost two months now. And truthfully, it’s been giving us trouble for about a year, but we’ve always managed to find solutions.
Last month, after trying different types of tubes, different sizes of tubes, different positioning, and different skincare strategies, it became clear we were out of options. Callie’s scoliosis is so severe the g-tube was being pulled under her rib cage. This was causing her almost constant pain, even though she rarely complained about it. So last week, we had Callie’s g-tube removed. We hope the site will close on its own, but we’ve scheduled surgery for a couple weeks from now in case that doesn’t happen.
We anticipated this — and Callie has been the biggest advocate for getting the tube permanently removed — so Callie has learned to take all her medications by mouth, and she is keeping up with her necessary hydration. Callie even swallows pills whole. I know plenty of adults who don’t swallow pills well, so we were impressed when she learned to time her swallowing to alternate with the back-up respiration rate on her bi-pap so she doesn’t choke.
This has not been an easy time for any of us. Callie’s g-tube has been one of her critical lifelines over the years. Having access to it has saved her life more than once when she was too sick to take medications by mouth. However, Callie has always faced life with more bravery than we could muster. And she’s faced this situation with the same bravery — she fully understands how important this g-tube has been in her survival, just like she understands surgery puts her life at risk.
She’s never wavered in her confidence that this is the right path for her life. Nathan and I always make the final call in every aspect of Callie’s medical care, but we also consider her wishes. This decision also has the support of Callie’s medical team at Duke and her palliative team at Brenner’s.
Even though Callie has shed a lot of tears over the physical pain she’s been in, she’s maintained her sense of humor throughout this entire ordeal. She and Nathan have a penchant for making up silly lyrics to well-known songs, and one the latest tunes around our house has been “another tube bites the dust.”
What a special spirit you have, Callie! Prayers for your body to respond in a positive way that avoids surgery, sweet girl…🐝🪁🌷🪁🐝
When I read updates on Callie I’m reminded of all the areas I’m tempted to complain about and all the areas I have great gratitude in! Your posts are a constant reminder of the difficulties of this journey called life, and yet the reminder of a redemptive God who will make all of these rough roads smooth and all of the crooked ways straight eventually. I am reminded how a small child can lead the way in bravery and how we as adults can become quite child-ish. And I’m reminded that no matter how many turns life takes, we have hope in the eternal as Revelation 21 and other passages in the Bible speak clearly of!
Callie, I know you don’t know me but I am praying that where that incision closes up that God will open up a healing in your body in a way that will take you completely by surprise! You are a beautiful gem in the body of Christ and your testimony speaks louder than 100 sermons!
And to all of Callie’s family… I pray for constant wisdom in the midst of confusion, strength in the midst of weakness, joy in the midst of sadness, and peace in the storms!
Sending a hug.
Much love,
Lori
This little Angel has such a special place in my heart – and in the heats of all who know her. My sister never could swallow pills, so Callie is some kind of amazing!
I dreamed about all three of her brothers night before last so I’m glad this post was about another of Callie’s achievements. Love and miss you all!!!
❤️
Callie,
You are an angel here on earth! God speaks to everyone of us as we read your posts. We have never heard of a braver girl than you and so beautiful inside and out. We pray that You heal from the tube removal and possible surgery. We know you are in God’s hands ! Love and prayers,
Sam & Patrice Martin
Former Ware Shoalions
Aw, Sad to think about, but sweet as well because we know how brave she is and because she has a perfect support system with the two of you and her brothers, cats, friends, doctors (this is getting long : ) !
Hang in there Callie! You are a super-strong girl!
Thanks for sharing the struggles with us. You guys are all amazing, You’re in our prayers always!
Callie you are truly an inspiration to so many .
I am praying your g tube site is healed very soon.
God bless you girl Keep up the “good fight “
Connie Kalista. (I work with your Grandmom)😀
🌈😀🌈😀🌈😀🌈😀🌈😀🌈😀🌈😀🌈😀🌈
Callie, you are amazing and so strong!! You, sweet girl, are a rock star!! Praying for you and your family.❤️❤️
Continued prayers for you and your sweet and very brave girl. You guys (all of you) are amazing. Will also pray for adequate nutrition and a successful, pain free and uncomplicated surgery!
Callie,
You are tough and brave, a remarkable young lady. I admire your strength, determination and beauty. Hollywood should make a movie “Callie Golden, The Golden Girl of Superheroes!”
Callie, you are one of the bravest and strongest little girls I have ever met! Prayers for you and your family as you learn how to handle life without your tube. May God continue to watch over you! PS I love your cat!! I have some cats too and I love to cuddle with them.🐱
Callie, you are so beautiful I pray you continue to be strong. We can all learn lessons from you. Always in prayer for you and your sweet family!
Diaz Scoggins
Callie, you are one mighty warrior! You have and continue to fight this battle with courage and strength with Almighty God, your family and friends by your side!
You are blessed and you are loved and lifted up in prayer for a miracle of healing and wholeness, with much grace to endure and persevere! Asking God to close up the g-tube hole so surgery is not necessary, but if it is, then I’m confident that He will see you through that as well! Rest in Him, Callie, and keep smiling, keep trusting, keep hoping! ♥️🙏
Callie, you and your family are in my daily thoughts and prayers. You are an amazing young woman who looks at life with hope and courage amidst the struggles of this life. Please know you have a huge fan club in Greensboro!
Dolly Jacobs,
First Pres. Church