Day +13,14 post transplant
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October 12
Day +13 Post Transplant
The weekend was pretty chill. Avry has had more awake times in the last few days — little pockets of energy where she’ll sit up and color for a bit. She even asked for mac and cheese!!We ordered her some, but after one bite she spit it out. Her mouth is still so raw that swallowing is impossible, and nothing tastes right.
The bleeding has increased, which is not good. It’s hard — excruciating really — to watch your child lose blood and not be able to fix it. She’s such a trooper through all of it. There have been nosebleeds on and off since Friday, but nothing major. She’s hyper-aware of the bleeding and tries so hard to manage it herself. Still, the constant wiping leaves her little mouth and hands stained with blood — a heartbreaking sight.
Because of the Defibrotide (VOD medication for her liver), we can’t give her anticoagulants right now. The balance is delicate.
Avry says she’s hungry and can’t wait to go home and make lasagna, spaghetti, and pumpkin pie — all officially on the “first-week-home” list. Lately she’s sat up in bed crying the most heart-piercing words:
“Are we ever going to go home? I don’t want to live in this hospital forever. Please ask the doctors when we can go home.”
She’s talking more and she does look better than she did a week ago. In Dr. Cohn’s words, “She’s still a very sick little girl,” and all of this will simply take time. But deep down, I have a strong feeling we’ll be home sooner rather than later. At our “what to expect” meeting, they said they’d be surprised if we got home in October — yet my mama heart says maybe the second-to-last week of October. That’s my guess. 😉
We’re giving half doses of platelets twice a day so as not to overload her with fluid. The platelets aren’t grafting yet, which is why she needs them so often. This is usually one of the last things to take hold. Please pray that the bleeding in her mouth will stop and the tissue will begin to heal.
On Saturday, Jake had to drive about an hour and a half away to work on his truck. He and Trace loaded up the dirt bike, and Trace rode for hours — free, wild, and grinning ear to ear. Trace told him, “Dad, this was the best day since cancer.” Hearing that — laughter, freedom, normalcy — felt like a healing of its own.
This coming weekend, Jake’s employee is putting their equipment in a parade and they’re also raffling off a gun at a trade show in honor of Avry. Jake wasn’t planning to go, but I’m hoping by then Avry will have turned a corner, and I’m encouraging him to take Trace along. They need that.
Saturday morning, we discontinued one of her antibiotics since no new cultures had grown and she’d been fever-free. But by Sunday afternoon, fever returned. By evening it was high again, and her blood pressure shot up enough to need medication to bring it down. The monitors were going wild for much of the night.
October 13
Day +14 post transplant
Monday
Monday
This morning, Dr. Cohn and Jason (our NP) came in and said they’re going back to the drawing board. They’re meeting with infectious disease and restarting all three antibiotic after the last day of fevers and bleeding.
Today was worse. Avry didn’t feel well at all. The bleeding has increased, and she needed oxygen to help her breathe. Her fevers spiked again, and they gave her Tylenol to try to bring them down. It was a long, hard day — one of those days where every minute feels heavy.
To give a clearer picture — Avry is on organ failure medication, is bleeding internally, and now needs respiratory support while running high fevers which is a sign of an infection we still don’t know the cause of.
It’s a lot to hold — hope, exhaustion, waiting — but even here, we can see small mercies showing up in the middle of the mess.
We are asking for a miracle.
Avry desperately needs your prayers.
Through every Red Sea we’ve faced, God has made a way — 100% of the time. And we are holding onto that truth now more than ever. Even here, even in the storm, we know He is at the helm.
Please continue to lift our family, our medical team, and especially our brave girl as she fights. We are believing for healing, for calm in the chaos, and for strength to rise again tomorrow.
“When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you.” Isa 43:2
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