It’s been a few days since my last post. We’ve moved back up on the 8th floor (Our home away from home of a month). There’s been a lot of progress and quite a few challenges since then. A brief recap:

-There are still some struggles with side effects of the meds. Flushing and tremors being the worst.

-The practitioners were correct in thinking she may have had a Chyle leak (Chylothorax) that developed from surgery. More details: https://www.aboutkidshealth.ca/Article?contentid=1654&language=English. This has also contributed to a partially collapsed lung. Tough girl!!! To treat it she’s been stuck with her chest tube a couple days or more longer than usual PLUS a super strict super low fat diet. No fun!

-All IVs, cannulas, and tubes are removed with the exception of her PICC line in her upper arm, the pesky chest tube, and her electrical pacing wires that haven’t been used in days but are still connected to her heart. (They usually take those out along with the chest tube with some assistance from Versid) 

-We’ve spent the day as students, learning all the things necessary to take care of her after discharge. Which may be as soon as Wednesday depending on the Chylothorax issue (!!!) Time with the transplant coordinator about rejection and life after transplant, the transplant pharmacist about her 30ish medication doses and how those meds work, and transplant dietician for food restrictions and healthy diet to promote a long and healthy life. 

Tomorrow she undergoes her first heart cath post transplant and her first biopsy of her new heart. This will tell the team if all the protocols set for her thus far are working and if anything needs to be tweaked. Not something she’s looking forward to but I feel safe in saying she’s not dreading it as much as her first experience at the beginning of September. With God’s help she came through that AND open heart surgery with heart transplant and He will bring her through this too. 

-Ashley