Callie has been slowly improving over the last couple of days. She’s been able to be off the Bipap machine for progressively longer periods while awake, but still uses it the majority of the day.
She also still requires oxygen while wearing Bipap. The goal is to get Callie stable on her home Bipap machine–we’re getting a new one that should be delivered any day now–and transfer her to a step-down unit. We anticipate that she’ll be discharged in the middle of next week.
We’re hoping that Callie will be able to bounce back from this. We know she will be on Bipap while sleeping, but it’s always a possibility that her need for more ventilation could be permanent.
Every time children with SMA get sick, like anyone else, they get weaker. Unfortunately, sometimes SMA children never fully regain their strength. We’ll wait and see.
Either way, Callie still enjoys life and we will make it as fulfilling for her as we possibly can.
We are reminded again and again of how fortunate we are. It takes only a few days in a pediatric intensive care unit to know that there is no shortage of tragedy in the world.
To see Callie awake, talking and enjoying life–even if we’re supporting her body more and more with machines–means the world to us.
So glad to hear of improvements and I appreciate these updates and what you and Nathan are teaching us all. I can’t imagine what you are dealing with day in and day out, but knowing that being able to see Callie “talking and laughing” is worth more than our words can begin to say, and knowing that her sweet smile lifts you and Nathan and renews your strength to continue all that is necessary to bring as good a life and health as you can for Callie. It just says volumes about the kind of people you two are and how just a little improvement and a little good news fuels your determination to provide that “good life” for Callie. You are two of the greatest heroes I know, your testimony of faith that we see in you is something many of us wish we could demonstrate day after day…thank you for that, and know our prayers are daily for Callie and You and Nathan and the boys, and your children’s grandparents, I know how grandparents feel about their grandchildren being sick or hurting. I say a special prayer for them too.
Bob
Ireally identify with you and Nathan about being in ICU peds at Duke and having the notion that other parents and kids are struggling so. Your message is hopeful. I am touched by the consistency of your words: “We will make her life as fulfilling as possible.” You all always say that in one way or another. I believe God’s love is holding you all up and giving you a vision of what is possible in the moment.
Hope that good things happen this coming week and we get to hear that all three of you are returning home.
Grace and Peace
Peggy
Fanner Bees at FUMC are storming heaven with prayers for Callie and the entire family. Your witness to all of us is amazing and glorious.
We are praying for Callie and your family. So glad to hear she is improving and that you anticipate her coming home soon.Your emails are an inspiration to all of us.
Praying for continued improvement each day.
So happy to hear she is showing improvement. She is so precious and beautiful…it hurts my heart to know that your little one is suffering in this way. Your attitude is very strong and inspiring, and I know little Callie picks up on your strength. Please know many prayers and loving thoughts are with you and your family.
Great to hear the good news of answered prayer will keep praying she gets stronger and able to come home
So happy for her progress…and your amazing attitude. The LORD is very apparently active and alive in you. May His unfailing love continue to carry you…and bring healing and restoration to your baby girl!
So glad to hear that there’s been some progress. We’ve been praying for you, and can’t wait to see Callie home soon. Let us know how we can help. 🙂 Give her big kisses from me!
Please know you all are in my prayers daily. Continue to maintain your hope through your faith. It may be difficult for Callie to maintain her resilience physically, but I have no doubt she is maintaining it mentally.