Wow. We got off the RVAD 5 days ago. Friday, January 1st, Kate was extubated from her breathing tube. Her sedation and pain meds are being weened. It’s been a tough few days. We are on 136 days in the hospital and day 21 post transplant. Kate has had 3 open heart surgeries in the past 3 weeks, including having her sternum opened twice.
Kate is dealing with withdrawal from anesthesia and narcotics. She’s dealing with a huge amount of excess fluid in her body from surgery and hospital mismanagement. Kate is also becoming more and more herself but still can’t move the way she wants. Kate also still has a nasal g-tube, and nasal o2 tube in addition to her her 3 iv lines. Today we got her urinary catheter out.
Friday and Saturday were tough. Lots of trouble coming off meds and Kate didn’t come off the breathing tube as easily as we would like, but it stayed out! It’s been an amazingly difficult few days. Kate has been on pain and sedation meds the entire time. It’s amazingly difficult to watch your little one suffer through withdrawal, knowing at times there’s nothing you can do other than be with them.
Today, Sunday, has been a good day! Kate got Physical Therapy for the first time since transplant! It’s a small step but Kate sat up for the first time today! It was a supported sit and only for about 10 minutes but it was a small victory. Kate is also more and more herself. We are seeing more communication and sign language. She’s still frustrated that she can’t do what she wants to do but we are thrilled to see more and more of our Kate!
On the medical side we are making progress too. We are getting rid of some meds. We still have about 23 separate IV pumps working to deliver what she needs but that’s down from where we were at. Today we are working on respiratory support, we got rid of the urinary catheder and the nasal stomach tube. All in all, it’s another day of progress.
This has been a much more difficult recovery road than we ever imagined. There have been lots of ups and downs. Lots of frustration and many happy moments. As always,thanks for the support. This has been the strangest holiday season ever. We haven’t celebrated Christmas yet and likely won’t for a bit yet. Here’s hoping we continue with the good
Kate’s IV Pole – Part 1 
Kate’s IV Pole – Part 2 
I’m thinking about you all and wishing you and Kate the best.