On top of it All

Seems like daily, every single day, on top of it all... you know the everyday burdens of raising a family... we have this heavy weight waiting to be dropped directly on top of us. A day that it doesn't fall is what I consider a good day. A day where it simply presses down on me rather than squashing me is an ok day. The day when its no longer there is a day I can't fathom.

Ashley's had some good days and some not so good days this last week or two. I can't put my finger on anything in particular, but I can tell that something is off.

Three nights ago we lost function of the main lumen in her central line. After some very, very tense hours(almost 4 to be exact) function was restored and we managed to keep the entire weight from falling on us. We felt so relieved because of how well it was flushing and drawing after that close call.

As we were hooking her TPN up to the line tonight we lost function once again. It was flushing easily, drawing back easily, and then locked up tight literally in the next second. Once you check for blood return the cap on the end of the line fills with blood and you have to flush it back through the catheter into the vein, it was in that second that it takes to push the blood back out of the cap that the line quit functioning. Its locked tighter than I have ever felt. In all the years and all the central lines Ash has had placed we have never seen it happen like this. Never felt it so tight. So impossible to flush or infuse into. Dave and I are left with no options at all. No saline, no heparin, no TPA will infuse into the lumen. Its gone. All function has ceased.

I'm sitting here in this moment feeling crushed underneath the burden of it all. Knowing that the only thing that keeps my daughter alive day after day is failing. What am I supposed to do with that knowledge? How am I supposed to feel? Can I stop this from happening? I'm so tired of watching the weight dangle above our heads. I'm so helpless to make life any different for any of us. I'm just sitting here, with no where to turn, no way to make it work, nothing I can do.

Our only saving grace tonight is that she has a double lumen and the smaller of the two is working. For tonight, that keeps us here, keeps her home, keeps her alive.

We have never seen a line behave the way this one has tonight. So soon after clearing it. It was literally three nights ago that tears stung my eyes as Dave and I searched and searched for direction on what to do when TPA failed to clear the line. We were lost. Struggling. Scared. We couldn't get it to draw back out of the lumen. It did nothing after dwelling hour after hour. We laid down out of pure exhaustion and set the alarm for 30 minutes and decided once it went off we would give it one more try. As Dave got up to attempt the withdraw he asked me to pray it worked. I feel asleep praying and pleading for blood return and the removal of the TPA. He came back into our room and held up a syringe full of blood.

Tonight I'm staring at this same lumen with no function at all and wondering what I'm supposed to do with it, what happened in that second where it stopped working, and how to proceed tonight. When I say I'm tired, I mean it. The burden, the worry, the struggle has worn on me so severely as of late. I long for carefree days. I would love to live a day of life with my sweet Ashley Kate that I didn't have to worry about her survival. Those kind of days don't exist in our world. For more than 6 years now I have worried about just making it to the next day with her.

I guess I'm going to lay down and pray and plead for help. Pray for His hands to reach down into the life of my tiniest girl and make that line work. I don't know what else to do. I've been crushed by the burden tonight and have no way out from underneath it.

In an easier world, a better world, our previous world, the line would have been pulled and replaced. We just don't have the luxury of living in that world anymore. When your on the very last line possible you hang on to it not matter what. I'm finding us doing that more often these days as we try again and again and again praying for function to return.

This...on top of it all...is where I'm at...and she sleeps soundly in her own bed tonight. Something I can smile about and be grateful for.