Thank you all for your patience during this time. I get asked quite frequently how Caylin is doing and what has changed, and I greatly appreciate you all for asking about her and your patience in waiting on updates. This week has seen some improvements in her kidney functions, and she has worked her way back up to receiving her daily g-tube feeds and has tolerated them well.
In addition to that, her team of doctors is doing their best to prepare her body for the coming liver, and to do so we need her to intake more calories. So the team found an alternative to TPN (this is an IV nutrition that causes liver damage) and they have started Caylin on SMOFlipids. It's a fantastic lipid IV nutrition that has been extremely successful in children with liver disease to aid in gaining weight while not causing harm to the liver. We are happy to have her on this new plan to help her body to become stronger for the transplant procedure and accept the liver.
While this is all positive news, Caylin is still managing a significant amount of pain that can breakthrough her medication at times and she has been much more tired. She is awake for only a few hours combined most days. Her body is doing all it can to heal and we are so appreciative of all the love and prayers and support and donations from you all.
I am living here in the room with Caylin and your support helps keep me at my best for her.
We love you.
Please keep sending your love, share her plumfund if you can as any donation helps us.