+Day 16,17 post transplant
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#miraclesforAvryJo
Day +16 Post Transplant
Wednesday, October 15
I feel like I should send an update, but honestly, there’s not much to update.
We’re finally starting to see glimpses of our girlie again! She asked me to read to her today and has already decided she’s going home next week. She is just so, so sweet and kind—melting our hearts in puddles these days.
We’re still struggling with her oxygen levels. She hates wearing it and rips it right off her face. As frustrating as that is, it’s also a good sign of her strength and stubbornness! But we really need her to keep it on so her body can heal. Her breathing has been alarming at times, so today we got creative—we added a little puppy to her oxygen mask and turned the oxygen all the way up. Now I just hold it close to her face, and it’s enough to keep her levels where they need to be and keep the monitors from screaming at us. It’s been a real struggle.
She’s still on TPN since she isn’t tolerating her feeds. Ugh—this part has been miserable! We finally get some into her and it all comes right back up. Her digestive system just isn’t ready yet, but we have to keep trying so we can get her off the TPN as soon as possible. I think I finally had the doctors convinced to just keep the rate low and stop trying to advance at this point in hopes, she will at least retain a little bit of the feedings.
She still has a bit of fluid built up around her lungs, and her liver is still quite enlarged. But the liver numbers are improving—and the bleeding has, too! Such a relief.
She’ll continue on the organ failure meds until Monday, and then we’ll see what happens with her numbers. It really could go either way at this point. 🙏🙏🙏
Today I was determined to get her out of bed. It’s honestly intimidating with all the wires, but I knew her lungs needed that repositioning. It wore her out and made her so sleepy—but I’m so proud of her!
This was also the first day in over a week that she didn’t need blood or platelets!
We’re taking teeny, tiny baby steps—but steps forward all the same. It’s been an incredibly stressful number of days,—-’Tis grace that brought me safe thus far, and grace will lead me home.’
Thursday—October 16
Today, Avry is getting both platelets and blood. Overall, her numbers continue to improve.
There are still two puzzles. Her liver numbers are looking better all the time, but her liver is still very swollen, making her abdomen also very swollen and tender. This seems to still be putting a lot of pressure on her lungs, which could be one reason why she is needing respiratory assistance—except for the fact that she is needing even more oxygen support. It could be due to high inflammation, which steroids could help with, but we don’t want to give steroids right now as that will mask any other red flags that we would need to see.
Yesterday, Dr. Koehn was as equally relieved as puzzled.
One thing that we know about the history of Avry over the past 8 months is that she loves to keep us guessing—she loves to keep the doctors on their toes!
Last night, during the night, we had her oxygen cranked up and still the monitors were going off all night. Avry’s oxygen would dip to 88%, and it would take some time to get it back up to 92%. At 92%, the monitors all go off—that’s the point at which she needs oxygen support. 88% doesn’t sound that much lower than 92%, except when it’s happening every hour over a prolonged period of time. This is not the environment in which she can heal or thrive.
Today she is very sleepy after the long night of low oxygen stats. We got her to keep on the high flow nasal cannula and now she’s able to rest! (Most likely when she wakes up, she’ll sit up and rip it off and try to throw it across the room!)
We’ve been talking about going home… a lot. And that hope alone is carrying us right now.
If Avry decides it’s next week- her body will most likely follow. Right now that seems impossible but we’ve been surprised before!
We’re still waiting to hear back from insurance about radiation. We’re hoping to start by mid November but still haven’t even been approved by the insurance. What a broken system indeed! God will make a way when there seems to be no way…
We don't get to choose our storms.
but we can choose who we become in them.
And sometimes, the bravest thing you'll ever do
is keep believing that God is still good - right here in the middle of it all.
If your heart’s been breaking lately, you’re not alone here.
Stay close — this space is for hope, healing, and real faith.
It’s not about ignoring the hard.
It’s about finding gratitude in spite of the hard — even when it feels like there’s nothing good left to see. Because there always is… if you have the courage to look for it.
That gratitude?
It’s what will get you through.
It will strengthen your heart and carry you all the way. 🌤 #miraclesforavryjo #neuroblastomawarrior #Stage4Strong #HopeInTheHard #ThePowerOfPause
Comments
Keturah Weaver
Rhoda Burkholdee
Where His grace cannot keep you !
God be near !Grant healing , grace and peace to all Involved!
Underneath are the Everlasting arms of God ! !
We are praying for you !
Martha Seitz
Cindy Swartzentruber
Irishlife04
Nancy Pedersen
A signal of strength and safety
Built to withstand the most powerful of storms
It stands in turbulent waters
Resilient
It conquers the darkness bringing order out of chaos
Warning I must proceed with caution
But giving hope that calmer waters are ahead
I look at the lighthouse
Symbolic as my Spiritual guide
Leading me through the chaotic times
As I am tossed in a sea of inner turmoil
It guides me through the darkest of nights
Before the dawn arrives
I need only to focus on the beacon of light
Always stable and reliant
It guides me into a harbor of tranquility
Safe from the turbulent seas that surrounded me
When the storm has passed
I’ll set back out to sea
Nancy Pedersen
January 1, 2021
I wrote that after a lengthy hospitalization where my body was teetering. I was starting to lose hope and put pen to paper. I am alive still today.
I continue to pray for you, All for strength and healing every night and first thing in the morning. Stay strong.
Marissa Fusi
Rachelle Stein
Peggy Donaldson