Crazy that we’ve been here for four weeks already. Yes, we’re still in the ICU. It’s getting a little frustrating. Okay, maybe a lot frustrating. The transplant team cleared Anya to leave, but there is a holdup with insurance now. They denied the transplant team’s first request to be moved over to Kindred about two weeks ago. No clue why they would want to spend more money keeping us here in the ICU versus kindred. I’m sure they have their reasons. Whatever they are.
So, Anya’s been doing great. I can honestly say that at this point, I feel like she is in the best shape that she’s been in since we arrived in Houston. Her breathing is great, that “pleural effusion” discovered in the X-rays last week is totally gone, and that bacterial infection did not show up in her cultures so they discontinued the new antibiotic…the only thing that remains is the ischemic injury in the left lung, which is getting “much better” according to the doctors. The team is ready to release her to Kindred, so I think that speaks volumes.
I don’t think that we’ll be at kindred for very long once we get there. Anya’s been walking like a champ. For two days in a row this past weekend, she walked several hundred feet without stopping and barely got winded. The walking is not the surprising part because she was walking a lot more at Kindred pre-transplant, but it’s the “barely winded” part that’s amazing. It’s been a while since Anya has been able to breathe like this. It’s such an amazing sight to see her breathe so much easier.
I think almost all problems have been resolved so far. The transplant team is planning on doing another bronchoscopy tomorrow afternoon to clean up the lungs and see how the ischemic injury is healing. If they like what they see, then I think the next step will be getting Anya off of the ventilator completely. I don’t think she needs it now, but they are keeping her on it to help her lungs heal faster. If she gets off of the ventilator completely, then I think insurance will move a little faster getting her out of the ICU. I’m hoping that we leave here before the end of the week for Anya’s sake. She’s really been struggling with life in the ICU. Four weeks in the ICU will drive any sane person crazy.
Other than that, there’s not a whole lot that has happened. They did remove the IV line in her neck and replaced it with a central line catheter in her left upper chest. The latter is a more of a longer term IV line where they can draw blood and administer medicine for the next several months while Anya continues to recover from the infections and the surgery. The IV line that was in her neck after the transplant is not something that you want to leave the hospital with, due to the high risk of infection.
That’s about it for now. Hopefully, in the next post, we’ll be over at Kindred.
Here’s Anya talking to her sister and Parker for the first time in about 3 months with the help of a Passy-muir valve: