Today has been a pretty good day so far. After the fever at 4:30am that was brought down with Tylenol, Naomi went back to sleep and woke in a much better mood than she was in last night. She was smiling and laughing and it warmed my heart to be around her. She had changed into a skirt and looked fantastic.
After her third round of rATG was completed, she really wanted a bath. Her nurse was on lunch break and another came in to unhook her from the machines. Before I knew it, Naomi was being taped like a UPS box and screaming about it. She has extra body hair because of her meds. She is quite furry, and this results in excruciatingly painful bandage changes. The tape the nurse used over her already existing bandage is the WORST tape for us to remove as Naomi was a wreck just knowing it had to be done. That was the worst hour of my life. Yes, it took an hour to bathe her and then remove the tape. And we have not even started her bandage change yet today.
After she dressed, she joined playgroup in the playroom and made a purse. Finally, she was ready to eat! She ate very little breakfast today.
She handled her rATG like a rock star again. When her dr visited today, she said that Naomi’s liver counts have gone down since we got here, too and she is very happy with Naomi’s condition right now.
The days are a whirlwind of activity with so many people in and out of the room. There is not much time to get bored. Quite to the contrary, I find myself being distracted repeatedly and get very little done.
Naomi got her first beads today to begin her Beads of Hope project. There are specific colored beads and designed/personalized beads for most things that happen here. Blood draws, infusions, chemotherapy, transplant, bandage changes, learning something new, self care. When she leaves, she and each of our children will have a string of Beads of Hope. I appreciate how COH keeps the family involved and recognizes the challenge this poses for Naomi’s siblings.
It is amazing that Day -2 is mostly over already. Last round of pre-transplant chemo is tonight!