Emily and I drove out to Boston to go to clinic yesterday. Bob had a meeting and couldn't come with us. Although this was probably the easiest hospital visit thus far, it is surprising how tiring it was. Emily and I just were wiped out today.
Everything looks great with the heart. I think the transplant team was pleased to see how well she is doing. We related Emily's progress in school and in cardiac rehab, and they were pleased with how far she has come. She can do 30 minutes of exercise, and actually, for the first time in her life, get out of breath. The issue she has been having is that after she works out she hits a wall so hard that she falls asleep in the car on the way home, and can't wake up for school at an hour later. So the transplant team said it was ok to stop going to rehab. That made Emily happy (and me) because now she will be able to go to class more reliably each morning. She needs to stay active and healthy, but using the rehab and pushing her exercise limits is not really necessary for her right now.
That is one of the things that makes working with our transplant team so wonderful. Whenever they can, they really try to consider the whole child in the management and care. This is a simple example, but there was no hesitation that giving up the last sessions of rehab was worth it to allow a little more school. We really feel like they listen to Emily and are very flexible about making her recovery about her whole recovery.
She has come so far in 3 and a half months, it is almost unbelievable. (in contrast we have a friend who is still in the hospital waiting for a heart after 3 months). Going back to the hospital is very challenging, because there is always the lingering fear that they will find something wrong and we will have to stay. I think that is part of the drain of going back that makes us so tired the day after.
We crashed in on Cousins Steve and Lisa & family for dinner, and literally ate and ran. They are among the many households we know that are adjusting to life with college kids returning for the summer. It was fun to hear more amusing stories about summer jobs and crazy schedules, and so many friends around to catch up with, and lots of food being consumed, and issues about all the "stuff" they bring home. Sounds familiar, eh? It was really great to see them all and we loved the dinner.