Carla  had a Physical Therapy evaluation, Occupational Therapy evaluation, echo & cardiologist appointment yesterday.  Today she had a pulmonary appointment.  The verdict is that she will need Physical Therapy and possibly Occupational Therapy (they need to call us back) for a while.  She is behind in both strength and coordination, which is honestly no big surprise to us, she can barely walk up and down stairs.  We are excited about starting her on treatments to help her get a little bit more age appropriate in these aspects.

Unfortunately, she had a little bit of a fever last night, so the Pulmonologist took a swab, and an x-ray, but he said that she sounds pretty good and looks a lot better than when he first saw her a little over a year ago. The fever was so disappointing to us because the only places she goes is to the hospital for doctor visits.  She wears her mask in the general area but this week we have also started to have her just wear the mask throughout the entire visit, because doctors, nurses and echo techs are all catching colds! I wish we would have made her wear the mask throughout every visit from the get go... I guess we live and learn.  Cardio results from yesterday's appointment are that the echo  looks good, her heart is starting to relax better (her BNP, is down to 300 which is cut in half from last weeks number of 600).  This number has always been mysteriously high, even though she has never shown any signs of rejection.  The doctors explain it as the heart needing time to relax as it is traumatized after being removed from one body, put on ice and then put in another body and shocked back to life.  We are thrilled to see this number come down and it is a great indicator that her new heart and body are starting to get used to one another.  Her levels all are "within range" so her rejection meds will remain the same, but because her BNP was down we will start to wean her diuretic :)  We were told that at 3 months she will need a heart biopsy.  So, scheduling will be calling us to set up a time for the biopsy in February ... as well as a bunch of PT appointments.

Love, Jen

No comments: