Day +10,11 post transplant
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Day +10 Post Transplant
October 9
I’m so grateful to be on this team with Jake!! Last night proved to be another full team effort. I don’t even know how many times we were up — but it was often! As we continue advancing her feeds, Avry’s system is working hard to adjust… and it’s not without a few rounds of projectile vomiting!
There were two days when Avry wasn’t able to get anything through her NG tube, but otherwise we’ve been trickle feeding. That simply means that this whole time — except for those two days — she’s had a tiny bit of nutrition flowing through her digestive tract. This helps keep her gut active and prevents it from shutting down, because once it does, it takes a lot of therapy to get a child eating by mouth again.
This morning, we’re going up another 5 mL on her feeds. Dr. Mian said that in a perfect world, she could be off TPN by Sunday or Monday if she reaches 50% of her feeds through the NG tube. Long-term TPN can strain the kidneys and liver — and we don’t need anything else putting pressure on those organs right now.
The washer on our floor broke last week, so we’ve been going up or down a floor to do laundry. I’m incredibly grateful we don’t have to haul laundry soaked with body fluids all the way home! Today they’re finally installing a new washer on our floor, and we could not be more excited!
This morning brought some truly good news — her liver and kidney functions are looking a little more stable. That means the treatment plan for VOD is working. Happy tears of relief and gratitude! I’m so thankful for Dr. Mian’s decision to move ahead quickly. He told us most doctors wouldn’t start the medication until one of her levels reached 3 or higher, but when he saw 2.8, he started it immediately. He studies every number closely and prides himself on staying one step ahead — and it’s paid off.
He also reminded us things can change very quickly, that we’re not out of the woods until we’re really out of the woods — meaning at least seven full days on this medication, and even after coming off it, numbers can still spike. So while he’s optimistic, we’re still treading softly.
As for the positive culture, infectious disease and the transplant team are still deciding whether to start a second antibiotic. Right now, she’s on a broad-spectrum antibiotic, but it may not cover this specific bacteria. Starting another could put too much strain on her kidneys, so they’re weighing risks versus benefits carefully. It’s such a slow-growing bacteria and takes days to reveal itself — and we just don’t know what might still be brewing in her body.
We’re deeply grateful that the echocardiogram came back mostly clear. It was difficult to get a good look, but nothing appeared alarming.
Right now, Avry has about a liter and a half of extra fluid on her tiny body. She’s so puffy, swollen, and miserable. Like I mentioned before, it’s such a delicate dance — giving her enough fluids to support her body without overloading it.
This afternoon, Avry woke up from her nap with a fever of 102. Normally this wouldn’t be surprising after being weaned off steroids, except that we tapered them so slowly, hoping to avoid a fever altogether. So now there’s a crease in the eyebrows — is it indeed a blood infection? What we’re dealing with stems from staph.
Dr. Mian gathered the team, retracing every test and step, and ordered more labs. She’s still on the broad-spectrum antibiotic, but just this morning, he said he didn’t feel comfortable adding a more specific one unless absolutely necessary because of the impact on her kidneys. This afternoon, though, after careful discussion, they decided to start it. It’s all about weighing risk versus reward — if we can get ahead of it now, even without absolute certainty, that outweighs the long-term effects it might have on her kidneys. Better that than looking back wishing we’d started sooner.
This evening her abdomen was so swollen that her skin looked shiny and tight. She’s so uncomfortable. The nurse practitioner came to take a look, and they ordered an ultrasound of her liver and spleen. It turns out her spleen is also enlarged due to the liver issues. We’ll learn more in the morning what that means.
During the night, Avry’s NG tube came out again while she was vomiting. We’ve been trying to increase her feeds to taper down the TPN, but it seems we advanced a bit too soon. In true Avry fashion, though, she blew us away — she helped insert her own feeding tube!! This time it wasn’t without pain and discomfort, but she handled it with such bravery.
Afterward, she asked to call Trace. He’s been begging to talk to her every night, but she usually doesn’t feel well enough. It was so precious. 💓 Trace was already in bed, but they both laid there in their little beds — miles apart — talking about their day. They asked each other what their favorite part of the day was, and Trace’s happiness was unmatched! Jake and I just watched, smiling.
We don’t tell Trace all the details of what’s happening; we always find something positive to share. He already carries enough worry on his own, and we don’t want him to feel the weight of how serious things are day to day. But he knows when she’s not well enough to talk, and that weighs heavily on him.
Avry had a hard time hearing him — she does so well with lip reading, but when there’s background noise, it becomes amplified to the point that it hurts her ears, making it hard to focus on words. Still, it was the best ending to a very long day. 💛
Day +11 Post Transplant
October 10
This morning, Jake left for work from the hospital. Nurse Simone was in here most of the night — Avry received platelets, blood, and Lasix.
First thing this morning, we did another ultrasound to monitor the blood flow through her liver. I can’t believe how far we’ve come with these ultrasounds. I snuggle up close, hold her hand, and try to distract her by watching Alvin and the Chipmunks. It hurts when they press down on her belly with the wand, but she does amazingly well.
Dr. Mian reported this morning that the stem cells are engrafting well!!! 🙌
But the platelets remain a problem — the ones she received during the night have already been used up by her body, specifically by the liver.
Her liver is very enlarged due to congestion. Dr. Mian wants to reduce her TPN by 50%, as the TPN is contributing to the liver congestion. The medication she’s on for VOD remains the only available treatment, so he’s closely studying other components to see what can be adjusted to relieve strain.
Nutrition is so important right now, but the liver has to take priority.We’re adding lipids into her fluids, but with her still holding a liter and a half of extra fluid, we have to be so careful with this balance. We’ve backed off on her feeds to avoid any more nausea and vomiting.
We’re continuing the antibiotic for the positive culture. The ultrasound of the blood flow in her liver came back without alarm. Looking back at last month’s echocardiogram, there’s evidence suggesting there may have been a clot near her heart — right where the Broviac catheter sits — which is no longer there. The concern now is whether it could be sitting somewhere else, so we’re waiting on more tests of all her main arteries.
The hard part is, if there is a clot, she can’t receive anticoagulants while on the VOD medication.
There’s so much 😰
When there’s one complication, it seems to invite another —
Her oxygen levels have been fluctuating quite a bit. Another ultrasound of her lungs showed they aren’t expanding fully, which makes sense with all the fluid pressing down on them. That’s also why her heart rate has been elevated again.
Dr. Mian mentioned earlier in the week that he thought we might be turning the corner by this weekend, but with these new complications, he’s predicting it could take another week to ‘turn the corner.’ Tomorrow, Dr. Cohn will step in as the lead transplant doctor for the next week.
Jake called me right after morning rounds.
“Are you okay? Should I come to the hospital?”
I told him, “Most of the time I believe she’s going to make it and come out the other side. But there are moments I just can’t help but… and so I just don’t think. I can’t let myself think further than the moment I’m in.”
Avry woke up this afternoon with a fever that’s been steadily climbing all day. She’s been extra sleepy—a sign that her little body is fighting hard.
I’ve tried to catch short naps here and there, but rest feels impossible with all the tests, alarms, and monitors going off every 10 to 15 minutes. It’s been a long, weary day of watching and waiting, praying her body finds strength to keep fighting.
Dear Jesus,
Please… ease her pain. Quiet her body, calm her spirit, and let her rest in the safety of Your arms. Let her feel the warmth of our love wrapping around her even here — through the tubes, the monitors, and the sleepless nights.
Hold her the way only You can — in every place I cannot reach. Remind her, deep in her little heart, that she is seen, cherished, and loved beyond measure.
Please, Lord, touch her liver with Your healing hands. Smooth out every complication, every swelling, every fear. You know the weight we carry — the helpless ache of watching our child suffer and not being able to fix it.
We surrender her to You again. 😭 Still, my heart longs… longs to go home, to tuck both my babies into bed, to laugh together in our kitchen again, to grow old with them as a family of 4, and see the beauty of ordinary life.
Please, God, make a way. Breathe healing into her body, and peace into this storm.
We need you.
Comments
Dawna Koehn
Amber Swarey
Nancy Fuller
Malinda Koehn
Loretta Thomas
Caroline Donovan
Ive read your update & again wonder how you all get through this every day and night. I pray every night for Avry. Sending much love and hugs. 🙏🧡🧡
Kendra Martin
Bethany Holdeman
Jillianrmb
Lisa Goodwin
Rachelle Stein
Serena Amoth
Jill Zundell
Risa Brubacher
Prayers for strength and courage and healing 🙏🏻♥️🙏🏻
Summer Carter
Joan Martin
Cindy Swartzentruber
Martha Seitz