Ashley's Story

She will leave fingerprints all over your heart



One breath at a time. That is what I am trying to tell myself to do.

Ashley's line is giving no blood return. Yesterday afternoon there was return. Last night there was not. Breathe. Its positional. Tomorrow it will probably work again. Don't panic.

Today...still no either lumen. Its unbelievable. Really it is. I so desire for a day to just breathe. No worries, no stresses, no burdens, no battles.

We have hep locked both lumens to keep them patent. It was supposed to keep this from happening. Still I'm trying not to panic...except... the only measure of judging placement of this hepatic line was mistakenly left at the PICU last week and now medical records believes they have thrown away the two discs that contain the images of comparison. I have no way of knowing if the line has shifted or migrated out of the hepatic vein. Without the discs to compare x-ray to we are in a bad place.

The line has been "tricky" since it was placed. One hour giving return, the next not, the next morning working again, the next afternoon not. This is why we were doing our best not to panic, just breathe, knowing that in the morning it could be functioning just fine. Except...that it is not. It flushes well, both lumens, just no blood return from either port. I've tried all the "tricks". Have no idea why its not working.

The last few months have been long, the last few weeks just as long, the last few days continuing to be long. Its making me tired. So tired. Knowing that its just going to be getting longer and longer until we come out on the other side of re-transplant is so hard to swallow.

Ash has managed to sleep another 22 hours in the last 24. So scary to see her so worn out. This entire time is frightening.

Medical records just called and confirmed that they did in fact shred our two discs. What now? I guess I'll just keep trying to breathe. The alternative is to stop.


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