Tiny Heart Hero…

Yesterday our tiny P had her (two hour!!!) ultrasound to check on the clots at the end of her superior vena cava, blocking off her jugular…

Tiny P has been getting twice daily shots of anticoagulants since November, to try to get rid of these clots, and at her last ultrasound in December the clots were unchanged.

Right away the ultrasound tech could see that there were still many clots yesterday, and that they were clearly not gone…but we had to wait until the tests could be read and compared, so we could talk with her hematologist today.
After reviewing her tests yesterday, they have determined that tiny P has chronic clotting. Further anticoagulation won’t improve it, and at this point all we can do is watch it.
So, we will continue to see her hematologist often, and get monthly ultrasounds…and we have a list of things to watch for.

In the meantime? We get to stop giving our baby shots twice a day! Even if we do have some added worries, giving up these shots, and taking the blood thinners out of her system is definitely something to celebrate!

Sadly, we have not given up our twice weekly blood checks…our tiny P’s immunosuppressant levels have been all over the place, and we have had a hard time getting her to a therapeutic level. This is the hardest part of life after transplant…in order to keep her body from rejecting her heart, tiny P has to be completely immunosuppressed for the rest of her life. These immunosuppressants have to be keep within a certain range to keep her heart protected, and if they get too high these anti-rejection medications are very toxic. A transplanted heart lasts in a recipient for about 8-10 years, so this is a dance we likely will be doing for quite a long time.

This girl of ours keeps us on our toes! But she sure is cute while she does it!

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