Tuesday, January 28th
Avery continued to spike fevers throughout the night. She was restless from pain and hourly pulse ox checks. She woke up at 5am with nausea and pain. They were able to give her additional medicines which allowed her to rest until about 7:30.
Her ANC has finally hit zero, but the rest of her labs looked OK this morning. She did require a platelet transfusion this afternoon as her platelets had dropped down into the 30s by the time they drew afternoon labs.
She was waking up every 2-2 1/2 hours with breakthrough pain, so they have increased her morphine drip. We kept her BA drip the same. The skin in the crease of her legs is starting to come off, but luckily it isn't causing pain. We will have to watch it closely to determine if wound care is needed. Before it is all said and done, they said she will shed her entire top layer of skin. Hopefully the fact that we haven't seen any bad burns yet means she won't get any since we are a week out from the Thiotepa. She is just extremely red and still itchy.
She has continued to run a fever all day even with the Tylenol. Her temperature has topped out at 102.8. She has only vomited three times today. Her poor mouth is now full of sores and causing her a lot of pain.

She stayed in bed all day again. We got into a cycle where she would fall asleep watching the iPad, and then I would pause it. A few minutes later she would wake and restart it...only to fall back asleep again in a few more minutes. This game continued all day.
They have closely been watching her I's and O's today and decided she needed Lasix to help get rid of the extra fluid she is accumulating They are also closely monitoring her weight and bilirubin levels. The biggest potential risk for her right now besides infection is Veno-Occlusive disease (VOD), so they will keep a very close eye on any potential symptoms.
Please continue to pray for:
- No more vomiting
- No more fevers
- Pain management
- Rest
My prayers and love continue to our Heavenly Father to touch with peace, rest, and all little Avery's other needs.
Continued prayers & love being sent y’all’s way!
Continuing to pray.
Continued prayers for all of you 🙏💕
Dear God please please take away the vomiting, fevers and pain. Please let this sweet baby get some extended rest time and her mom as well. Please God heal this sweet child. My heart breaks into every time I read the horrible pain she has endured. Continuing to pray for complete healing.