Plan is still for Elle to grow (4.82 kg this AM, a slow, steady increase) and fight off any bugs with her courses of antibiotics and anti fungals. There will be more labs and a CT, then a care team / family conference on Monday regarding her status and plan. If things look good at that time, she will get her Hickman placed and plan for next steps of Xplant. She is undergoing extended workup d/t her fragility.
Daylon is back on the BMT unit -yay! Heard he is smiling, even laughing, and riding around in a wagon. Payton is getting closer to the chemo count down. Still working on getting Bella back here. Chloe and I got to watch a movie with Bella's parents and big sister, Ali at the RMH cinema. It was a fun distraction, especially for Chloe who had a great time chatting it up and playing with Ali, who is four.
Proud of my dad; getting right
Elle's wounds have improved; pink instead of beefy, less drainage and less odor, and a slightly smaller area affected. She is still quite uncomfortable at times though and it is a challenge to figure out where the problem is. It could be a folded ear she is lying on or cramping before a diarrhea (from the antibiotics). Sometimes her bandages shift, or she may be teething (no sign of a tooth yet,however). She is consolable if we find the problem and / or give her narcs. Oh, she is on Oxycodone now instead of Morphine as it seems to be very effective without the itch.
What is new, is that she sometimes is happy and interested in some distraction, but notices me leaving or getting too far away and then yowls...makes going to the restroom difficult but I love that she is so interactive now! She is batting at toys hanging overhead or wiggled in front of her. She watches lights and movement of her new crib toy. She is calmed by lullabies. Last night, she was crying and I jumped out of bed to see what was wrong and as soon as I came near, the crying abated, and when I presented her dolly, she smiled. Heaven,even at 345 AM.