Sunday, February 2nd
Avery struggled with pain and fevers throughout the night causing her to not rest well at all. Her weight was down this morning(which is a good thing), so they plan to reduce her Lasix back to once a day unless she receives a lot of extra fluid. Her ANC was 240, so we are hoping that tomorrow will be her first day at 500 or above. Unfortunately, it will still take some more time for her pain and side effects to diminish, but she should only be days away from some relief.
She has also been having diarrhea a few times a day and some pretty bad stomach pains. Hopefully as her counts rise and they can wean her off some of the meds, her stomach will settle as well. Thankfully she did not vomit any today.
She required a blood transfusion and another platelet transfusion today. She has had self-induced nose bleeds on and off all day. She keeps scratching/picking at her nose causing it to bleed, which then causes dried blood and clots, which then in turn causing more scratching/picking.
Her fever curve is trending downwards. He fever actually broke once today when she was receiving the blood transfusion, but then it went back to 100.6 or so. Hopefully we can stay in this range and away from those high fevers that make her so miserable.
As her counts begin to recover, they will eventually shift focus to putting the rest of her back together. They will slowly introduce her feeds back and work to wake up her gut. They will start weaning her from IV meds and switch to NG meds . They will figure out how to balance her electrolytes once she stops TPN. Her NG tube is finally shot, so they will need to replace it as we will still be using it for feeds and meds at home for at least a few more months. We will work with PT and OT to help her gain some of her strength back. The Dr said pending no new complications, we could be looking at going home in 10-14 days.
Please continue to pray for:
- No more fevers
- Pain management
- Rest
- No more diarrhea and stomach pain
- No VOD
Thankful for small positive steps forward. Continued prayers for all of you. 🙏💕
Prayers continuing daily for precious Avery and for all the family!🙏❤️
Good news! Praying for Avery to keep progressing. Hoping to see some of those sweet smiles. Praying for mom and dad.
Avery has been so strong and brave to endure all she has had to go through. Continued prayers for complete healing for this sweet baby girl. You all are in my thoughts and prayers!! ❤️
This child has fought so hard to defeat this. God knows how she has fought and he will help completely heal this sweet bravery. Prayers for her to have a better day starting tomorrow forward. Love, hugs, strength and prayers for her and her family. 🙏🙏