Thursday, November 21st
It was a long night last night. Avery vomited shortly after midnight. They gave her some medicine to help the nausea. The medicine did its job, but it also kept her awake until 3am. I tried laying in bed with her, in the chair beside her, music, stories,etc. but she just kept poking me and waking me up to tell me she couldn't sleep. Luckily, shortly after 3, she drifted back to sleep. She had no more fevers overnight.
Her blood counts looked good so no transfusions were needed today. They kept the same course for her electrolyte replacement. The decided to remove the Vancomycin(antibiotic) to give her kidneys a rest. We adjusted her scheduled morphine to every 4 hours to begin weaning her off of it. Her HSV-1 test came back negative, and her cultures continued to have no growth. Her ANC remains at zero.
She had a pretty good morning though she was not as energetic as usual. It was one of our least favorite days as she had to have her port de-accessed and re-accessed again since it had been 7 days, and we weren't going home anytime soon. She did surprisingly well and got to enjoy a short bubble bath in between.
Her energy and mood continued to decline the rest of the afternoon leading us to believe that she was about to spike a fever again. And just like the night before, she spiked to 101.x shortly after 8pm. Tylenol was able to quickly break the fever though, and she was back to feeling decent before bed time.
Given the continued fevers and the nonexistent ANC, there is a very good chance that she will not get scans or stem cell harvest next week. Scans require general anesthesia and stem cells required sedation, neither of which we want to do when she has been running fever.
Please continue to pray for:
- No fever
- ANC to begin rising
- Continued management of pain
- A clear plan for the coming weeks
- Rest
Praying for you both. Lori Beth, you are doing a great job and I know you are exhausted. This precious child is very blessed to have you by her side. Please know that we all love you and your whole family. Try to rest and take care of yourself and not just Avery. As a mother I know that you would do anything for your children, and to do that you have be able to survive all of the day and night stress that you are both under. God bless you and your family.
Continued prayers and much love for Avery and her family! I hope a better night and brighter day are in her future♥️♥️♥️ I wish for all that you are hoping for to come to pass for her, Lori Beth! I hope home is also coming soon for the two of you!
Sorry Avery and you missed out on a full nights rest. Praying her pain can be controlled, no fever, and a workable plan for the next week. My love and continued prayers for all family.
Praying for rest & strength, no more complications,home for Thanksgiving! Avery & family are a strong force against this cancer.Praying for total healing!
Glad she’s getting some rest. Continued prayers for all of you. 🙏