Friday, January 31st
Last night was a long night. Avery was still in a lot of pain. She vomitted once and was screaming in pain in between the retching. Her temperature spiked to 104.8. Her O2 sats kept dropping, and she kept fighting us about the oxygen.
Avery's mouth and esophagus are both raw. She screamed in pain the first and only time she did her mouth care. She ended up vomiting a couple of more times, the last time containing a little bit of fresh blood from her raw throat. They kept her morphine drip the same as they didn't want to increase it and potentially affect her breathing. She is still using a lot of as needed doses for the pain. She can barely speak due to the swelling, and she has a constant gurgle in her throat due to all the secretions.
Her weight is still going up a little so they've switched to Lasix twice a day now. She had a repeat liver ultrasound today which looked better. Her blood flow was still good and the size of her liver had actually gone down slightly.
Her temperature hung out around 102.6 most of the day. They increased her Tylenol dosage amount so she can only get it every 6 hrs and only if she passes 103. It finally spiked back above 103 about 6pm. Her platelets had dropped into the 40s, so they just finished a transfusion around 11pm.
Her physical strength has diminished noticeably in the past couple of days. She had trouble getting out of the bathtub(even with assistance), and she has had trouble getting back into bed on her own. She doesn't want us lifting her right now as the skin is peeling under her arms causing pain.
On a positive note, her White Blood Cell count had climbed to 0.17 this afternoon, and they were able to count 7 monocytes(there is someone that actually counts them). These are itty bitty baby steps, but steps in the right direction nonetheless.
Since Avery continues to spike fevers, they decided to access her port today to draw labs for cultures. Shon was with her this evening when they did it(saving me from having to put her through it), but he said she did as well as can be expected. She was scheduled to be accessed on the 7th anyway, as you have to be accessed and hep-locked every 30 days, so at least this started the clock over.
Please continue to pray for:
- No more fevers
- Pain management
- Rest
- Engraftment to take place soon
- No VOD
Always praying
Continuing to pray for Avery. Praying for her to have no more fever, no more vomiting, effective pain management, for her to rest and engraftment to take place soon. Asking and believing God for her to ultimately be completely healed.
Romans 12:12
Praying that Jesus wraps His arms around little Avery today and gives her the comfort and strength that only He can to face another day. Praying that her little body will grow stronger by the moment. And praying for Mom and Dad whose hearts ache seeing their little girl suffering so. God, bring healing we pray!
Continuing in our prayers and thoughts! Trusting God for continued strength & complete healing.
My heart hurts for her. Glad they’re seeing small positive steps though. Hang in there momma and daddy. All of you continue to be in my prayers. 💕