We have had a (mostly) easy few months with our tiny P...there is the usual blood work each week while we struggle to get the levels of her immunosuppressants under control, of course. Sometimes they are too low, not providing enough protection, and sometimes they are way too high, becoming toxic for our girl, and making her have seizures. But, for the most part, we are just home, living life.
But our tiny P doesn't make it too easy for us... in the past few months we have noticed a lump on the side of her neck. We let her team know about it, and sent them pictures. We had x-rays done, and the lump would go away, and then return a few days later.
Recently, it's not been going away. And in the mornings our girl has woken up with some swelling from fluid.
A few weeks ago, her cardiologist was discussing tiny P's symptoms with her cath surgeon, and when he saw the pictures of her neck he thought he might know what the cause was!
This week, with the symptoms getting more pronounced, he had us come in for an ECHO.
We think our girl might have some narrowing or some kind of blockage in one of her veins in her heart. We had hoped that the ECHO might give us some idea of where this blockage could be, but unfortunately, given tiny P's unique anatomy, and the way her hero heart is placed, it is almost impossible to see any of the vein!
For now, her cath has been scheduled for the 17th of November... they will measure her pressures, take a biopsy (one year post-transplant!), check her vein (the SVC), and possibly close off some collateral veins that have developed.
We do not like to think about the possibility of there being anything wrong with our girl's hero heart...
but we do know she is in the very best hands she could be in. Every person in her team loves her and is invested in her health and growth, and we know, as always...hope wins.