Wow! What a strange Christmas holiday!
Thursday, Christmas Eve, Kate got her breathing tube and several other tubes removed! We also started the weaning process on lots of stuff. There have been a couple pauses for things but in general Kate has been a rock star dealing with everything. It’s not easy seeing your little one suffering withdrawal symptoms as her narcotic levels slowly go down. That said, it’s exciting to see the quantities slowly go down.
Kate’s heart and lungs have been working hard, too. The RVAD has been doing it’s job, letting Kate’s new heart get used to the lungs and letting the lungs relax for the heart, aided by drugs. It’s been going so good that tomorrow Kate comes off the RVAD! This is super exciting as she gets the huge tubes caring lots of blood out of her chest! Unfortunately this means she has to go in for another surgery that again opens up her chest. This will be Kate’s 10th time under anesthesia…at only 20 months old. This surgery will be a bit of a setback in terms of recovery, but a necessary one that we are happy for. Kate will have to go back on some more narcotics and have to be intubated again. We’ll also end up back on higher respiratory care for a bit but hopefully it will be short-term. With this surgery, we’re hoping we get to start the final steps towards the recovery path.
We’re excited for the next steps! It’s been fun seeing our little Kate poke through the narcotics. She’s back to needing some kind of clothing. Yesterday she started picking off her ECG stickers that track her heart rate. It feels really good to be her rock, her source of comfort in her hard times. We’re looking forward to things getting better and tomorrow is a very strong step forward!
This just gets better and better!! Now I really look forward to reading your updates with such wonderful news and cute photos of Kate. She really is remarkable!?
Awesome!