It’s been 158 days for this hospital stay, 43 days since transplant, and 27 days since the RVAD came out. Updates have been slower lately as Kate has been getting stronger and better and she’s keeping us super busy!
Kate is doing much better lately. This past weekend she was regularly standing up in her chair and walking around with assistance. We are off all respiratory support as of Saturday so no more nose tube! Kate has been moving so much we quickly had to switch back to a crib from the more traditional hospital bed. She was rolling and moving around a ton. We are still weaning lots of drugs. She has a huge drug list but most of them have been transferred to oral (g-tube) from IV, which helps a lot. We are down to just 4 IV pumps plus her food pump on the IV pole so today we get to put the IV Pole Steering Wheel back on! Yay! We’re back in clothes today! We are officially off ICU status, and we don’t have to be constantly plugged into telemetry (heart rate monitor).
There’s still tons of frustration and poor decisions being made by the hospital. We’re at the point where we are just trying to focus our energy on defining and making progress on discharge needs so I’m not going to gripe here about this weekend’s “fun”.
It’s been very relieving to see Kate come back to herself. She’s laughing and giggling more than I think we have ever seen from her. She’s still not talking but is making more verbalizations all the time.
Overall it’s fun to start to see some brightness at the end of the tunnel. This time I don’t think it’s an oncoming train!
Check out some fun recent Kate Videos
Happy News! I am so happy that Kate is doing this well. It must be wonderful to see your little girl become who she is! I will be waiting to read that you are all back home and able to hear her giggles fill your house!
Love, Aunt Kathy
This is the best news I’ve read all year. Lady Bernadette is about to be kicking so much butt and taking so many names!
<3