It has been exactly 7 days since Kendall has been home after receiving her new heart. We are extremely excited, grateful, and blessed. We are definitely getting adjusted to our new normal.
She has been feeling pretty good. We have a system/schedule for medications, exercises at home until she can start therapy, allowing extra time for such things as dressing, bathing, eating, virtual school etc….she is in control and everything is based on how she feels and how much energy she has.
There are a lot of appointments coming up but I will post them as they come up so that I will be able to provide you with more frequent updates.
She has to get her blood drawn once a week in order to check to see if her immunosuppresant medications need to be adjusted. Last week her levels were low so we had to increase one of the medications from 4mg/day to 5mg/day. After tomorrow’s blood draw/results, we will adjust again according to the numbers. Also last weeks results showed that she had a high level of EBV(epstein barr virus). We were told it is common to see this virus after a transplant because of getting a donor heart and also blood transfusions. Having this virus after transplant can cause some very serious complications if you don’t take your medications on time and/or not communicating to transplant team of any changes in her condition that are out of the norm at home.
She was negative for this virus prior to transplant so she had to have contracted it from another source. We were educated about symptoms to look out for that we should notify the doctors about but as of right now, she feels fine. She takes some mini naps on occasion but other than that she is symptom free of any virus. Since the levels were on the high side last week, tomorrow is the 1 week repeat lab day and we have to take her to a U of M lab in Northville.
We have resumed online virtual learning gradually and trying to do work in at least one subject a day.
Thank you for everyone that showed up for her surprise drive thru, for any card, text, phone call, flowers, and gifts that you have sent. We know we have a very caring and supportive team and we are so grateful for anything that you have done to show your love and support.
#TeamKendall
#BeKendallStrong