Wednesday, May 20, 2009

Good Report

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.

Sunday, May 17, 2009

No News is Good News



We haven't posted because not much has happened, and that's good news. Emily is busy with school part time, tutoring, cardiac rehab three times per week, horseback riding, dance, and coaching the little swimmers. In fact she is at the annual swim team banquet tonight. I got her to stand still for a picture before she left. She looks pretty good for 15 weeks post-transplant, don't you think?

She still gets really tired and needs a nap most days after the exercise, but she's getting a pretty good 30 minute workout. She is occasionally a little nauseated, but most of the time she is eating pretty well. We are able to get her blood draws for her Tacrolimus (Prograf) levels done locally, which means we don't need to be at Children's at 8 AM when we go there, which is down to once every three weeks.

Friday, May 1, 2009

More good results

We went to Children's on Tuesday for another biopsy and routine tests. The biopsy, echo, and EKG were all good, with a zero for the rejection score. She had a period of tachycardia in the cath lab that was quickly controlled but sounded scary. They thought it was just the heart reacting to be poked. All of the tests for donor-specific antibodies in her blood came back negative, which is wonderful news. This means no more treatments are indicated right now with immunoglobulin that leave her feeling sick for days.

Some combination of the travel, the fasting for the biopsy, the sedation, and the associated turmoil of a hospital visit made her very fatigued this week.

We moved out of Webster on Tuesday with the help of our friend Kathie, who met us there and helped us clean and make beds. Now there is a good friend for you! We also were able to visit with Cindy & Fred on Monday night - they brought us some good Chinese food.

The next clinic visit is scheduled for three weeks. In the meantime she is very busy, and a little tired.