Friday, February 7th
Avery didn't rest well at all on Thursday night. It was after midnight when she fell asleep, and she woke up every single time the nurse came in. She was constantly calling for me and fighting us to get vitals.
Her ANC was 960 this morning. Since it had fallen below 1000, they ordered another dose of Neupogen today. We will continue this pattern until it holds on its own. Everything else looked good, and no transfusions were needed. They took another step down on her BA and morphine drips. Avery should be completely weaned from those in a few more days.
The team made the decision to give her a break from her NG tube for a couple of days. They will replace it around Monday and try to restart feeds. Nutrition is often one of the last things keeping you from going home from BMT, and that will likely be the case for us. Not only does Avery need the NG tube for medicine, but most importantly, she needs it for nutrition and hydration. She has been on 24hr continuous feeds since late September. This ensures she gets 1344 calories a day of balanced nutrition. This takes a lot of stress off of her and us when she doesn't feel like eating by mouth. Given her track record she will likely continue to need feeds for at least a few months.
Since she is without a tube right now, we have to try and get her to taker her Actigall by mouth. This is the only medicine that does't come in IV form, and it is very important as it is for her liver. After a nearly 2hr standoff and a few bribes, I convinced her to take the medicine. She gave it to herself and took a few sips of water. Within 2 minutes, she had thrown it up along with anything else that may have been in her stomach. For tonight's dose, we took it in capsule form and held her mouth open and poured the powder in. This resulted in her vomiting the entire contents of her stomach yet again. Since she doesn't eat or drink anything, we can't hide or mix it in with anything. We will keep trying tomorrow though.
She took a couple of naps today but was pretty restless during them. She did feel well enough to build some more Legos tonight.
Avery is now asleep, and we are hoping for a restful and uneventful night.
Please continue to pray for:
- No more vomiting
- Tolerate nutrition and medicines
- No new complications
- Rest
Praying for continued improvement!
We love Avery's smile. It must be a light for you, Lori Beth. Avery is going through so much, but know it hurts your heart when she has a rough time with anything. We pray for healing for Avery and peace, comfort, and rest for both of you!!!!! We appreciate your sharing your days and nights with us so we can pray for all of you. Love, hugs, and continuing prayers.
Love to see her smile! Continued prayers for all of you. 💕🙏
Love this picture of that courageous smile. Continued prayers for complete healing. 🙏🙏