Saturday, October 17th
Friday night was quite possibly the worst night we have ever experienced. Avery started hurting at 9, so we gave her a dose of morphine. It did nothing, so we gave her a dose at 11. It did nothing as well, so we paged the on-call doctors. They increased her morphine drip and gave another spot dose of morphine. After 4 doses and the drip increase, she was finally given some relief. It was enough relief to eat some chocolate ice cream at 2:30am, but sadly the relief lasted less than an hour. She screamed in agony all night long. After 6 prns of Morphine, two increases to her morphine drip, and a dose of Benadryl for a pre-med, she finally fell asleep at 5:30am. As hard as the night was on me, I can't even fathom how hard is was on Avery.
She tried to sleep throughout the morning, but the pain, although much better controlled, still kept waking her up. We noticed some redness and increased drainage from her g-tube last night. The surgery team came by and looked but weren't too concerned as she is on multiple antibiotics which would cover any kind of infection. After our team looked at it, they said it was cellulitis.
Avery's platelets and hemoglobin were good so no transfusions were needed. Her sodium was 137. Her ANC had risen to 160. Due to her pain, we stopped her feeds which we had just added back in at half rate yesterday. She had 2 low grade fevers overnight and this morning, but she hasn't spiked since then.
Due to her increased pain and continued fevers, they ordered another abdominal CT. It was torturous for Avery to get the CT. Just the act of me moving her from the bed to the table caused excruciating pain. We gave her valium prior to the scan to help with some of her anxiety. Although it didn't help during the scan, it did allow her to calm quickly after. Towards the end of the day, she finally felt well enough to play a little. I feel like her pain is still there constantly, but she due to the extreme episodes, she is better able to tolerate it.
She fell asleep watching the iPad tonight. She keeps randomly crying out, but we continue to treat those episodes of pain as possible. We are praying and hopeful for better days. As Avery stated tonight "I've had a lot of bad days lately." 😢
Please continue to pray for:
- Counts to continue to rise
- Pain management
- No more fevers
- G-tube heals quickly
- Upcoming scans
There are just no words to say what my heart feels reading this. I am so sorry she is having this severe pain, and I don't understand why there is no relief. You must be at your wits end just witnessing her like this, and again, there are no words. I pray for all pain to end, complete healing, her numbers to be good and for you both to get to go home pain free and feeling good days coming. God bless you all!
Praying for Avery.
Dear Lord please allow her counts to continue to rise, give her better pain management, having no more fevers, allowing her G-tube to heal quickly, and allowing for good results with upcoming scans.
Please give Avery and her family strength and wisdom to get through this battle and see bright light on the other side.
In Jesus name I pray.
God bless Avery. She must have really had bad days by her saying that. I am missing her smile but understand. Continued prayers for all you have ask for and prayers for all of y’all. God please heal her little body and take away this horrible Cancer from her body. Healing on this side would be such a wonderful thing. 🙏🙏🙏🙏
Praying for your sweet baby!