Saturday, September 5th
Avery remained fever free through the night on Friday. She woke up at 1am this morning drenched in sweat though. We quickly changed her clothes and sheets and got her back to sleep. Unfortunately, she battled with diarrhea at 4am(and most of the rest of the day).
During her morning meds, Avery got sick and vomited up her NG tube again. I felt terrible that I wasn't able to keep it in, despite holding it against her face, but I felt even worse that she was going to have to get another one later in the day. She shook it off, and we played Legos and slime most of the morning.
Her sodium had dropped slightly to 137, so they switched back to supplements twice a day. Luckily they agreed to add the sodium to her feeds to keep her from getting so nauseous. They also agreed to switch her weekend Bactrim to monthly Pentamidine since she was struggling keeping the Bactrim down. Pentamidine is given via her port, and although it makes her nauseous while receiving it, we figured 90 minutes once a month was better than 4 times every weekend. Her platelets were in the 90s, and her H&H was around 7.5. Her ANC remains at 0. She spiked a temp in the 101s shortly after lunch but has remained fever free since then. Her blood cultures from 9/4 and her CSF cultures continue to show no growth. Hopefully we will get a name for the bacteria we are dealing with from the 9/3 cultures.
Right before noon, we had to have the new NG inserted. This was finally Avery's breaking point. I knew it was coming, as much as I hoped it wouldn't. She has been so strong the past two weeks as she was put through the ringer. She fought and fought and did not calm down at all when it was over. They gave her Benadryl and Ativan to help with nausea and to calm her, but this only made things worse. She was exhausted but fought sleep with everything she had. She screamed and kicked and hit until nearly 6pm. We were all worried about her. They even rechecked her sodium to ensure it wasn't causing her mental state(it was 140). Then finally right before shift change, she magically calmed down and went back to her normal self. She has played and talked most of the evening. Thankfully we are ending the day on a good notes, but it was a super tough day for all involved.
Please continue to pray for:
- Rest
- No more fever
- No nausea or diarrhea
- ANC to begin rising
Praying for all of you!
Praying for all that you have ask for above and complete healing on this side. Love this tough little girl and her family. 🙏🙏🙏
Praying for a better night and rest for her! 🙏🙏🥰
Many prayers an much love ur families way. God bless!
WOW! God bless that precious little girl. I don't blame her; as you said, we all get to the no turning back point, and I know she has taken more than I could in her place. It helps her to release the anger, frustration, pain, and intense feelings that she can't identify - - - something akin to fear for us. Lori Beth, you are one of the strongest moms I know. God HAD to have chosen you and Shon for her parents; nobody else could be there for her like you are, and she feels that love and protection. I pray for no more fever, pain, nausea, diarrhea, and for all her tests to be in normal ran…