Day 32

· Ruby's IWK Journey

Written by Thomas

Hello all,

Ruby had a good night, she slept well after a day of only a few short naps yesterday. She seems to want to be more awake and active these days. She has been awake and wiggling most of the day so far, and seems very with it though not completely"herself." They are trying to balance how much she is wiggling with how sedated she is... because wiggles help move fluid around, but she needs to be comfortable and keep her heart rate lower.

Ruby's heart rate has been a bit higher since yesterday, a little above the target. They increased to dose of what she was already on and started another oral medication to further decrease her heart rate. They are both beta blockers, the one they started today is one she could go home on, but the other one can only be given via VI so they'll need to wean that eventually. She is still peeing well, getting a negative fluid balance, and the edema is slowly reducing.

The surgeon was in this morning to check on Ruby's chest tubes and stitches. He said that her stitches can come out, so his assistant came and did that a little while ago.

Ruby has been waitlisted for her tracheostomy on Friday, so we should have a better idea of what time on Friday morning.

We are hoping today that she keeps improving, that her heart rate can be lowered a bit more, and that the preparations for the trach go smoothly.

Thank you all for your thoughts and prayers for our sweet little Ruby