Monday, February 10th
Avery rested soundly last night with the exception of a 4am bathroom trip and slept until after 9am this morning. Her ANC was down to 550, so she received another dose of Neupogen today. The rest of her labs were good, so no transfusions were needed. They stepped her morphine down a little bit today as well.
We went ahead and placed her NG tube back this morning. The first attempt it coiled in her throat(because she refuses to swallow), but the second attempt was a success. A chest x-ray confirmed correct placement. They started her feeds back mid-afternoon at 10mL per hour to see if she can tolerate them better.
The Ativan they gave her before getting her tube counteracted the normal sleepiness from the Benadryl, so she didn't get a nap in today. She mostly kept to herself today. She did perk up enough to paint some Valentine's hearts with her child life specialist and play a few rounds of Tag with Ryan against me and Shon.
When she was getting her nightly bath, we noticed that her central line dressing was coming up. Unfortunately that meant it had to be replaced. This is a tortuous event for Avery that required three of us to hold her down while one nurse cleaned and applied the new dressing. At least this restarted our clock, so she shouldn't have to get it changed again until next Monday.
The long day had finally taken its toll, and she fell asleep while I was brushing my teeth. We are hoping for another good night of rest.
Please continue to pray for:
- No more vomiting
- Tolerate nutrition and medicines
- No new complications
- Rest
It's amazing to me how mother's of very sick and/or special needs children often become an expert in their child's condition or situation. Reading your posts tells me you are indeed the MD (Mom Doctor) concerning Avery's cancer & treatment. You know the lingo, medical terms, numbers, symptoms, and pretty much everything a nonphysician can understand Plus a lot they don't know! Mary Ellen told me a funny acronym used for overly self educated moms but i can't remember it for the life of me. I've heard her say so many times that the Drs. treating James are experts in their field of specialty but She/Moms are experts on James/ their child. I read in your posts how you ca…
Praying for sweet Avery to tolerate the nutrition with no additional complications or vomiting. Praying for all, continued strength, peace and much needed rest.
Father, you know our hearts and Avery's needs for today. Thank you for giving us a sweet smile from her. Bless her family as they care 24 hours a day for her. She needs strength as she continues these trasplant days. Love to this family
Praying for no more vomiting or new complications, rest and tolerance nutrition and medications. Such a sweet little girl. I pray for strength for all of you.