Thursday, January 30th
Avery is still fighting an uphill battle in regards to pain management today. They upped her morphine drip this morning because she required 6 additional doses yesterday. She is still waking every 2-3 hours asking for pain medicine. Her mouth is so swollen and sore that she can barely fit the toothette in her mouth to do her mouth care. She has barely spoken all day because it just hurts too badly. The Dr said we could still expect her to need to increase the pain medicines daily for the next few days.
Her ultrasound yesterday showed that her liver was enlarged by 13%. This coupled with an elevated bilirubin and fluid retention have them on the verge of treating her for VOD(Veno-occlusive disease). Thankfully she is not having any liver tenderness and her hepatic vein flow is still spot on. If any other signs point to VOD, they will start her on Defibrotide. They have shown that earlier treatment of VOD leads to better outcomes.
She has continued to have her temperature hang out in the 103s most of the day. It has dipped down some in the 102s. Since her liver is of concern, they will only be giving Tylenol for a fever of 103 of greater. At this point though, the Tylenol is not providing much if any relief. She is still under the cooling blanket, and we have the room temperature turned down to 67. Her heart rate is still staying elevated due to the fevers, and her O2 sats are still fluctuating requiring the additional oxygen. She only vomited once today but has been dealing with diarrhea from the mucositis.
She is keeping her nurses busy with her daily medicine schedule:
- Cefapime - every 8 hours
- Vancomycin(IV) - every 8 hours
- Gentamicin - every 8 hours
- Micafungin - once a day
- Zantac - twice a day
- Tylenol - as needed for 103+ fevers and as a pre-med for blood/platelets
- Benadryl - continuous drip and as a pre-med for Vacomycin and blood/platelets
- Ativan - continuous drip and as needed for nausea
- Morphine - continuous drip and as needed every 2 hours
- Acyclovir - twice a day
- Actigalll - twice a day
- Vancomycin(PO) - 4 times a day
- TPN - continuous
- Lasix - 1-2 times per day
- Neupogen - once daily
We will continue to take things one day at a time(sometimes one hour at a time) and hope that each day gets us closer to recovery.
Please continue to pray for:
- No more fevers
- Pain management
- Rest
- Engraftment to take place soon
- No VOD
I will continue to pray for Avery and her family for their continued strength and healing 🙏.
I'm joining with you and the others in praying for Avery's fever to break, for her to have effective pain management and rest, and that her engraftment will soon take place. Praying that God will heal her body completely and she will have a powerful testimony to share with others to His Glory.
Praying from Glencoe Alabama. Thank you for this blog. I pray each time I read it.
Praying for rest today for you both
Praying for Avery to be pain free and for side effects to subside. Also praying for engraftment! 💕💕💕💕