Baby steps

Well it wasn’t as quiet as we hoped this weekend but Kate is still making small progress.
Kate’s still sedated. She has moments of wakefulness now and then. Often she is agitated when awake…understandable with all the lines and tubes. That said, she has very cute moments too…she’s obviously loopy but she will occasionally make some of her signs or try to switch to a different video on the iPad. All very normal things for Kate!

Today we made some serious steps toward getting her breathing tube removed. We’re still a couple of days away from that happening but we’re making progress. The breathing tube being in is the driving force behind the sedation. We are really hoping Kate might get the tube out before Christmas.

Monday’s tests showed some progress with the new heart and lungs making friends. It’s slow, small steps but it’s progress. Ultimately we’re on a waiting game.

We’re struggling again with our common hospital issues. Communication and continuity of care are things we have expressed frustrations with this entire stay. Kate’s change in needs has brought a new set of nurses and providers into the picture. We are having to train them all over again what we want for Kate’s care and communication desires.

Unfortunately the unit we are in seems to almost pride themselves on no continuity of care. Staff are shocked when they hear that we had the same nurse for 3 days. It’s frustrating to have to teach each new person what calming techniques work for Kate. Ugg.

Here’s hoping for continuing progress. As always,thanks for all the support. From people dropping food or sending food delivery cards to people just expressing their support. From all three of us, Thanks!