Day +7 post transplant
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October 6, Monday
Day +7 post transplant
This morning, Avry woke up with a fever of 104.8 . We started a higher dose of steroids in hopes of lowering the inflammation and kicking that fever. We still have not identified the source of the fever, however there is a good chance it is from the white blood cells starting to come in. We hope so!!
Dr Miah’s demeanor was hushed and somber. The next 3 to 4 days are crucial days. Dr. Mian likened the next few days to the whiplash after an accident. Today being the first day after the accident with severity trending upwards (in a negative way) until they plateau.
We’ve seen a trending rise in her liver function. This indicates VOD. VOD is a serious, potentially life-threatening complication of hematopoietic stem cell transplantation (HSCT), characterized by liver damage and signs of fluid retention like hepatomegaly (enlarged liver). Her belly is very swollen due to the enlarged liver. This compromises her lungs as it is pressing down on them which is why she purrs or moans when she’s sleeping. The swollen liver means the cells are bigger than they should be which are pressing the blood vessels making them too small to function properly. The lining of the liver was destroyed during the high dose chemo. That means the rate at which bile moves thro the liver is decreased to the point of causing harmful toxicity in the body.
The medicine that will help to open up her blood vessels has adverse side effects. One of them is bleeding. Dr Mian said he is very very cautious. He is double and triple checking all the numbers and her labs. This is when we cannot afford to miss . He prefaced us for what he expects to see this week. This is his expertise- (BMT) bone marrow transplant for neuroblastoma. He’s chief of Pediatric Hematology/Oncology and the Department of Pediatrics. He’s excellent at what he does and there is no question his 25+ years of experience Carries weight
Janessa came in and brought Avry her beads of courage. She strung her three favorite beads and then handed it to me. She didn’t say much at all to Janessa. She just laid there and listened to Janessa talk. I know she found comfort in Janessa being here.
They upped her morphine PCA . She’s also getting a higher dose of steroids because of her high fever again today. She’s very tired. I can’t even begin to imagine how hard her body is fighting and what she must feel like. The mucositis is a little bit worse- I didn’t know it could get worse. She’s sleeping today. Late afternoon she woke up and sat up, but was pretty dazed. She just sat there and then she asked me to snuggle with her and watch her favorite show- Samantha. It’s a story based off of the early 1900s about a little girl who was an orphan and went to live with her grandma. She became best friends with the Neighbor girls who were servants. Samantha ends up getting adopted by her uncle but has no playmates. The little Neighbor girls also become orphans and then eventually get adopted by Samantha’s uncle and aunt. It’s a story that brings so much comfort to Avry. She loves to watch the little girls play together in their Victorian dresses, and learn to read. She loves Samantha’s Locket and how she keeps pictures of her parents close to her heart. Avry loves how on Christmas Day Samantha gets the best gift in the world- three little sisters to love and play with and become family forever! This story was my favorite story as a little girl and I think it’s safe to say that Avry loves it as much as I do! This time, though she didn’t even last but 10 minutes and she fell asleep on my arm! The movie is almost 2 hours long and sometimes we watch it twice in a row!
Avry has a lot of mouth pain. She doesn’t want to open her mouth or talk and smiling is really hard.
Tonight the blood cultures came back positive. So now we know why the steroids are no longer kicking the fever. We’re dealing with something else. We don’t know what that is yet.
We appreciate every single message and every single prayer
More than you could ever imagine! Thank you.
Comments
Rachelle Stein
Sharon Huber
Kathleen Decker
Irishlife04
Jill Zundell
Loretta Thomas
Peggy Donaldson
Debra Martin
Ruth Zehr
Amber Swarey
Cindy Swartzentruber
Nancy Pedersen
Abigail Good
Rachel Harris
Kerri Klassen
Avry’s story helps me to enjoy the small, simple things in life, and you all give me more courage to face what looks overwhelming…🙂
norma willey
Nadine High
Elsie Weaver
Twila Beachy
Sharon Nissley
Marsha Farrar
Sherri Dirks
Claytonnolt
Jillianrmb
Julianne Miller
Rhoda Burkholdee
We are so blessed by your faith and Courage! We pray for God's healing touch for Avery and Courage and strength, all you need in these hard days !
May you continue to feel God's everlasting arms holding you.
Cheryl Kones
Emily Anderson
Clineclan3
I felt and to think you’re doing that with a sweet little one. My heart goes out to you. As a mom you want to take all of the pain and the hurt! Praying Jesus touches her and gives you strength and daddy and Jake too! 🙏🏻
Monica Lambright
Serena Amoth
Gail Barbour
Quilter
Janetrusso55