Monday, November 18th
Avery struggled some with pain overnight. She had to get 2 prn(as needed) doses of pain medicine in addition to her regularly scheduled does. She got sick once in the night and continued to battle with fevers off and on.
Her labs this morning showed that her hemoglobin and platelets were both low, and some of her electrolytes are still out of whack. She received a blood transfusion this afternoon and will receive her platelets overnight. Her ANC remains at 0.
She surprised us all with how well she did at her CT scan. They did not sedate her, and she was perfectly still and calm the entire time. She earned a nice prize and a lot of praise for that behavior! The scan results came back clear, along with her virus panel. This means that the source of her fever is still unknown.
Her fever continued throughout the day. It only reached 102.5 today, and the Tylenol seemed to be much more effective. The fevers are breaking and staying gone for a little while before coming back. Hopefully we are on our way to be fever free in a couple of days.
She was awake more today than the previous days and spent most of mid-day to late afternoon awake. She is not very talkative or playful due to her pain, but it was a nice change to see her alert for multiple hours.
Her schedule is keeping the nurses busy(and we have been blessed with some of the best nurses.) Her day looked something like this:
10.5 hours - antibiotics (3.5 hours 3 times a day)
1 hour - Fluconazole
3.5 hours - Blood transfusion
4 hours - sodium phosphate bolus
45 minutes - platelet transfusion
Morphine every 3 hours
Benadryl every 6 hours
Tylenol every 4 hours(as needed)
KPhos packets twice a day
We skipped her magnesium supplement today due to time constraints and until they can determine the best course of action. The IV mag isn't helping enough; the liquid mag upsets her stomach, and the crushed mag tablet diluted in water is at risk of clogging her NG tube due to thickness.
Please continue to pray for:
- Quick count recovery
- No more vomiting
- Determine the source of fever
- Pain management
- Rest
So thankful for every minute that Avery is able to sit up and at least do something she enjoys for however long that she can. She is such a strong girl and yes, someday she will “move mountains”. Continuing to pray for her mouth to heal from the mucositis, for no more fever, and for rest for all of you. Prayers for complete healing. God bless you all!
The word perseverance most definitely describes you and your daughter. I am amazed at the true, crushing love I am reading about. My prayers continue.
Happy to hear she’s improving a little. 💕. Continued prayers for all of you. 🙏