Thursday, February 6th
Avery finally rested well last night. She slept solid until we had to wake her to get her weight at 8:30am this morning. Her ANC was 2810 today. We expect to see it creep back down a little in the next few days since we have stopped the Neupogen doses.
She continues to be fever free. They stopped her Cefapime today which was the last antibiotic she was on. They continue to decrease her BA drip daily and started lowering her morphine drip as well. She required a platelet transfusion today, but the rest of her numbers looked good. They restarted her feeds this morning at 10mL per hour.
Her mouth pain is getting much better, and the swelling continues to go down. She is still a little difficult to understand when she talks, but in the next few days that will likely improve greatly. We hope to be able to start back with mouth care in a couple of days. Her skin is peeling like crazy leaving a trail behind her wherever she goes.
She took another long much needed nap from about 11-4:30. After she woke up, she was in a great mood. We started working on a new Lego set and played some games. She even gave us a few smiles which we haven't seen in quite some time!
She got her bath and was settled into bed earlier than usual. She was playing the iPad, and i was about to write an update when she sat up complaining of stomach pain. I rushed over with a bag and managed to catch it right as she started vomiting. Unfortunately she was vomiting so forcefully that she threw up her NG tube again. I pulled it out of her nose and mouth again as she continued to get sick. Our nurse could hear her from the hallway and brought us some medicine to help stop the vomiting. We got her settled back into bed and had to once again take the sticky dressing off her poor sensitive cheek. I told them there was no way we would replace the tube tonight ans luckily they agreed. We will wait until the morning to discuss with the team what to do next . We obviously can't have this happening every night!
Avery had a much harder time falling asleep tonight. I laid with her in her bed as long as my back would allow, and then I moved to the chair beside her. We listed to her bedtime music on repeat until she finally drifted off shortly after midnight.
Please continue to pray for:
- No more vomiting
- That she tolerate a new tube and her feeds
- No issues weaning off medicines
- Rest
God bless this precious child with a restful night, no more vomiting,no issues weaning off her meds and the ability to tolerate a new tube and her feeds. Also please bless her precious mom with rest.
So happy she is doing better and to see a smile on her sweet face! Continued prayers for complete recovery for Avery and you all. ❤️🙏🙏🙏
Continuing to pray.